I received an e-mail from someone that quite frankly I found to be not so much offensive as it was a little self promoting or in another way of putting it trying to one up me and its not the first time this has been done. I sometimes get upset at the clear and utter lack of unity in the Epilepsy community the hesitancy to work with other organizations for fear of losing your supporters or followers, the mindset is somewhat sad that you feel compelled to not collaborate with others because your afraid they will come along and steel your thunder or may have ulterior motives. The Epilepsy community should be the one place and one area that we all as parents, caregivers, advocates, educators, medical professionals should all come together and work hand in hand at all events in all communities where we reside for the greater good after all we are supposed to all be wanting the same thing and that is a cure. Working as a team and uniting is the only way that will ever be accomplished.

Starting a non-profit is not easy, its challenging, time consuming, stressful to say the least but it also is one of the most rewarding both personally and spiritually for me it has been my biggest blessing. It’s a journey I would not trade for anything. I have met some of the most incredible families, and the children have become like my own children nothing I would not do for any of them. I have also met some wonderful people on this journey that run other organizations as well whom have been supportive and willing to help if needed the way it should be. It does not matter if your an organization that has been in business 10 years or 6 months because what matters is that you make a difference all in the name of your cause. For those that are established instead of feeling superior over others perhaps take some of the newer up and coming organizations under your wing and show them how it is done, teach them, mentor them. Work with them, collaborate so that they can see what it is that worked for you and teach them how to incorporate what you learned into something they can learn from too.

It is through the teachings of others that we learn and grow. Imagine all that is being wasted because we don’t reach out and we don’t show or share a united front. As the founder of the Epilepsy Warriors Foundation I want to reach out and work with other organizations and collaborate so that we can not only benefit from learning but so that we can help them achieve some of their goals too. I look to the older more established ones as the ones that I can learn from and find out the right things to do so that we can succeed. Every organization that is out their has value, has a role, has a passion but sadly what I see more of is the competitiveness, and the attitude that they are better than everyone else because they are more established not true we are all of equal value and we all are making a difference. No matter how great or small it still goes along way in helping us with what our main mission is that is finding a cure.

I don’t care how many T-shirts you have sold, I don’t care how much money you have donated to other organizations over the years that is great and very much needed but personally what I care about is the children and the families they are my main focus and the reason I started in the first place. This is my passion, my calling, it’s what God put into my heart to do and I do it gladly and willingly without asking or looking for anything in return. To me if your doing it for any other reason then what you started out to do then your not in this for the right reasons and perhaps you need to go back to the beginning and see why you started in the first place because you have lost not only your mission but also what your vision was.

Jay Jay was one of those children that just brightened my world so many times when I saw that big smile and the light that shone brightly around him. I will forever miss that smile, that light is now shining brightly in heaven, he is at peace. When a child dies, it is one of the hardest things in life to understand. We have lost so many children to Epilepsy or  again we are looking into the tearful eyes of their parents, and we see one another. We know that without divine help, we could not bear that pain. We think about a precious life snatched away before it was fully formed, like a flower snipped from the stem just as it was beginning to bloom. We question “Why” but only God knows the real answer to that question. But what I do know is that for whatever reason God called him home the one thing that is getting me through this new loss is knowing that he is Free. No more pain, no more suffering, no more tears, just happiness and joy and he is probably already running around and playing with John, Danny, Scott Jr, Chelsea, CeCe (Cecelia), Adaleigh, Jordan, Piper, Joey, Donna, Eric, Kyle, Ryan, Savannah, Ezekial, Sam, Christopher Adam, Brayden, Joseph, Connor, Dallas, Bradley, Ken, Lydia, Giovanni, Marissa, Lizzy, Tina, Matthew, Clayton, Carolina, Samuel, Melanie and having a good time and that puts a smile on my face the way it did from the very first time I saw his precious face and that infectious smile in his photographs. He is another one of our Angels that is going to be with each of us helping us in our cause and advocacy work that we need done to get the funding and research we need to find and get the CURE.

If I can offer any peace or comfort to both his parents Kari and Karim as it’s so hard words never come easy and people really do not know what to say I can offer you this. I have offered this to many of our parents who sadly and recently lost a beautiful child  and I believe in my heart for this to be true. Always remember the good times, their were many, always remember he loved you, he did, always remember that infectious smile, its in your heart beating. Remember that even though he is no longer physically with us he has never left you, he is in your heart and soul, when you look up to the heavens at night and you see the brightest star sparkling like diamonds in the sky that is Jay Jay winking at you saying “Hey Mommy & Daddy don’t worry I am doing great, you taught me that” when you see a rainbow after a storm that is Jay Jay telling you “Thank you for calming my fears and keeping me safe for seeing the beauty in me through my eyes”  When you hear the rain that is Jay Jay telling you “Hey Mommy, Daddy don’t cry you gave me the best of everything, you gave me the best thing a little boy ever needed a family” celebrate his life for their is much for you to celebrate and know that one day you will see him again and what an occasion that will be.

Jay Jay, thank you so much for touching me and all those who knew and even those that did not know you personally but only through our extended family it was an honor, privilege to know, learn about and most of all love you. You taught us all about fighting and staying strong through your grace, dignity and courage and  I/we will honor your memory every day. Epilepsy will not win this battle and we know you will be guiding me and this foundation over the years so that we can continue to build the bridges within our community as we are all taking that walk across the “Bridge of Faith in order to reach and cross the Bridge of Hope to a cure”. God Bless You Sweet Jay Jay.

This is a favorite song of mine sung by an 8 year old Gospel Singer I hope it brings comfort. Give our love to all our Children and let them know we honor, love and miss them every day.

http://www.youtube.com/watch?v=DDDlxmsciqY

From my family and our foundations family we want to extend our deepest condolences to the entire Oulahyane family during this most difficult of times. We love you and your in our thoughts and prayers as is Jay Jay. Gone but never forgotten.

God of light thank you for helping to guide us out of the darkness of pain and grief that occurred after the loss of our beautiful children. Now that they are gone every single memory is both precious and holy. Bless each memory we have of our children so that they will continue to live on in our hearts and minds forever.”

“WHEN GOD CALLS LITTLE CHILDREN”

When God calls little children
to dwell with him above,
We mortals sometime question
the wisdom of his love
For no heartache compares with
the death of one small child
Who does so much to make our world,
seem wonderful and mild
Perhaps God tires of calling
the aged to his fold,
So He picks a rosebud,
before he can grow old.
God knows how much we need them,
and so he takes but a few
To make the land of Heaven
more beautiful to view.
Believing this is difficult still
somehow we must try,
The saddest word mankind knows will always be “Goodbye.”
So when a little child departs
we who are left behind
Must realize God loves children,
Angels are hard to find.

I thought maybe he was getting sick but I knew something was wrong. Later that afternoon I was in the shower and I heard him crying so I ran out of the shower to see what was wrong. He said he fell and hit his elbow. About a half hour later we are sitting at the dinner table, and I see him falling out of his chair so I caught him and NOW I’m freaking out! I take his temperature Low grade, nothing exciting 99.9 I call his father and ask him how he fell because I didn’t see the first 2 falls. Was he running? Did he trip on a curb? He said no, actually he was holding my hand and just walking.

I call my Uncle who is a Dr and my Mom who is a Nurse and I also spoke with a nurse from a 24 hour pediatric clinic. They all said fevers could cause dizziness treat the fever watch him. While at the mall I see him collapse again I pick him up and take him to the local ER. Catscan, blood work, chest X-ray , urinalysis Diagnosis vertigo due to a virus. I slept with him and in the morning I left his room while he sat on the floor reading. I was brushing my teeth when I heard him crying again.

My heart sunk because I knew he had fallen again and he was lying on the floor. His speech was slurred rushed him to All Children’s Hospital in St. Pete. I told the staff in the ER that I think he is having seizures and gave them the history from the past 3 days. They said they were going to hook him up to some monitors and to let them know if I think he’s having one so they could figure it out. Before they start an IV take his vitals, and hook him up to the monitors I see his head drop so I scream for the staff and they said yes that is a seizure . 15 minutes later I watch him start to shake and go into a full on tonic-clonic. I call for every one again and I run towards his head to make sure he doesn’t aspirate. He was given Ativan and cerabrex . He had a horrible night!

The next day was horrible again his speech was slurred, he was angry staggering and trying to pull his EEG off every 10 minutes now screaming ” get this hat off of me! “. On his way down to have an MRI done he informed us that when he falls first the room spins then he falls in slow motion. First 5 day visit. September 28th, August 4th and 5th he had 3 breakthrough seizures. In the meantime I’m calling his Dr’s office trying to find out why. I insisted on having his levels checked. He had 3 seizures on the 5th. September 6, 2 seizures in the morning . Gave him Dilantin . He has a 3rd seizure at home and another one an hour later. Then a tonic-clonic in the bath tub that I had to pull him out of. The next morning he has another tonic-clonic in the hospital room. The Dr. Watched on EEG switched him to depakote. Depakote apparently did not work for him. He had 14 seizures that week. Back in hospital 10 day visit this time. EEG back on. He wasn’t having any seizures. He has a cluster then he goes a week seizure free.

Day 8 he has a few small seizures I knew he would have a grand mal in the morning and he did. Dr. Winesett put him on Zomisade. It was working for him but made him angry. Dr Winesett wanted to switch him to Lamictal. We are still in the transition phase from Zonisamide to Lamictal he is taking both. He has had 3 seizures in three months so major improvement. I am always scared but I know everything happens for a reason. I am very optomistic that he will grow out of it but if he does not we will just take things one step at a time.

Colin is a 15 yr old boy and Cailean is a 9 yr old girl living with Dravet Syndrome, a rare seizure disorder. Also known as Severe Myoclonic Epilepsy of Infancy (SMEI) is a severe form of epilepsy.  It appears during the first year of life with frequent febrile seizures – fever-related seizures that, by definition, are rare beyond age 5.  Later, other types of seizures typically arise, including myoclonus (involuntary muscle spasms).  Status epilepticus – a state of continuous seizure requiring emergency medical care – also may occur.  Children with Dravet syndrome typically experience poor development of language and motor skills, hyperactivity, and difficulty relating to others.

In 30 to 80 percent of cases, Dravet syndrome is caused by defects in a gene required for the proper function of brain cells.  Borderline SMEI (SMEB) and another type of infant-onset epilepsy called generalized epilepsy with febrile seizures plus (GEFS+) are caused by defects in the same gene.  In GEFS+, febrile seizures may persist beyond age 5

Candace Carney their Mom says I am a single mom of 3 great kids. Epilepsy has taught us to live every day and love every moment.  I survive on hope and faith and laughter. Parenting kids with special needs has taught me that every single day is precious. She says Colin had his first seizure at 5.5 months and Cailean had her first seizure at 7 months of age. It took years to finally get a correct diagnosis and finally be on the right road of treatment. Today they are doing well participating in school and on a special needs competition cheerleading squad.  They love to swim and ride the rides at Great America. Colin averages at least 1 seizure, usually a cluster of seizures, every 7-10 days. Cailean is much more sporadic. They each take more than 360 pills a month to try to control their seizures. There is no cure. We live each and every day to its fullest and on faith, hope and love.

My Warrior Princess…..Tori

 I never knew a child could teach an adult so much….until I had Tori.  Tori’s journey began on December 20, 2006 her birthday.  She came into this world fighting after she aspirated meconium at birth and could not breathe.   During this time Tori coded and then when she was revived, only had 7% oxygen saturation for an hour. She fought for her life and survived getting placed on a life support system called ECMO.  We were told that Tori had brain damage from the lack of oxygen, but they could not tell us the extent.  On New Year’s Eve 2006, when Tori was 10 days old, she suffered a grade four hemorrhage.  We were told that it was time to let our baby girl go.  They let us say good bye to the little girl who we loved so much and then they took her off the life-support.   Being in the waiting room while they removed her from the machines was the absolute hardest time in my life.  I prayed harder than I ever had, and was so confused why this was happening to this beautiful baby.

The doctors came out when the procedure was finished and told us Tori actually made it through the procedure and was in stable condition and we could go see her.  This time tears of joy flooded me.

This damage to Tori’s brain began Tori’s battle with Seizures.  The damage from the hypoxia and the hemorrhage resulted in Epilepsy.  The first we heard of Tori having a seizure the doctors said she has facial seizures.  I was in denial and of course thought the doctors were wrong.  They treated Tori for a year with Phenobarbital, and my little fighter would spit it in our face when we gave it.  Her warrior qualities could sometimes be quite a challenge!!!!  After a year Tori was tested with an EEG and was able to come off of the medication for seizures.  We thought that we kicked the Epilepsy and that it was part of her past, until the day, when Tori was three years old, and she had her first grand Mal Seizure.   I was in Boston and got the call she was having a seizure and the ambulance was on its way.  I flew home praying and begging god to once again carry our little girl through this hurdle.

I blamed Tori’s immunizations that she recently had for the seizure and thought it was a one- time thing.  Only…..it wasn’t.  Tori continued to have grand mal seizures on a regular basis.  No medications would stop the seizures.  As Tori’s epilepsy battle went on the seizures became more frequent, worse and longer in duration.  She would seize for over a half hour at a time and even Diastat no longer would stop the seizures.  I was afraid for my little girl.   If she caught me crying she would tell me not to worry and that she would be OK, but my fear continued.  I could not lose the most precious gift I ever had.

On April 6, 2011, after months of testing, Tori had the right frontal lobe of her brain removed to try to control and hopefully stop her seizures.  Tori developed meningitis from the surgery.  She had to have a PIC line and IV meds for 6 weeks.  But through all of this Tori kept a smile on her face and was making the hospital staff laugh at her funny jokes and sarcasm.  We were worried that our girly girl would be upset the first time she looked at her head and saw she had not hair from the surgery.  Instead she looked in the mirror, Smiled and said, I have a bald just like my PAPA and Mr. Scott!!!!  Then she called them to brag to them she was just like them!

This was not the last of Tori’s seizures, even after the surgery Tori continued to seize.  It was less often, but we made the decision to get her a seizure dog.  She loves her dog Scrappy and he has brought her so much comfort and gives her the peace of mind that she sleeps better.  (all of her seizures happen during sleep so she was afraid to sleep)

This is Tori’s journey to date.  She has not had a seizure in almost six months now and we know her strength got her and us through this journey with her.  She amazes us with her courage, love for others, and love for life.

Tori had a care page that we created when she was one day old.  Over 400 people wrote on it to support and show prayer for our little girl.  Many people where family and friends, and many were strangers.  They would write about how our daughter taught them what was important in life and what strength and faith really was.  She is a true warrior and I am so proud and lucky to be her mother.

A poem someone put on her care page, author is John Alessi

The Brave Little Soul

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this – it is a great miracle.”

God continued, “Many souls have bravely chosen to go into the world and suffer – to unlock this love – to create this miracle – for the good of all humanity.” Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!” God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you, Tori. ” God and the brave little soul shared a smile, and then embraced.

In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased

She had her first tonic-clonic seizure soon after her second birthday. She had been having absence seizures before that but they weren’t recognized as such until her first EEG in Nov 2010. She had lots of spikes and an absence seizure while doing the EEG.  Her neurologist ordered some labs which I was not prepared for the answers at our two week follow-up. We go in and he sits down and explains she has epilepsy then says she also has an extra part of chromosome 22. He continues by saying it’s really rare and there is very little information. She has 22q 11.2 duplication. It is similar to the deletion also known as DiGeorge Syndrome. With this diagnosis has come many, many more.

She has had a gtube for over a year and a half now because she in the summer of 2011 she all of a sudden stopped walking, talking, eating and drinking. She was continuously being hospitalized for dehydration. Finally we got the gtube and nissen which has literally saved her life. It was meant to use along with her still eating by mouth. She continued to eat and drink only tiny amounts so the tube was great. It was great because not only could she be nourished but could also take all of her meds. She was on a few different ones and refused to take them by mouth. She had trialed a few different ones to control  her seizures. Some worked for a short time and others not at all. That’s when I realized her epilepsy (myoclonic-astatic or doose syndrome) was not going to be so easy to control. We sought a second and even third opinion. We finally have a combination of meds that are controlling them pretty well. She still has seizures but nowhere near as many as before.

She still continues to fight many more battles.  In Sept 2012 she went into respiratory failure and septic shock. The doctors said no way would she make it and I needed to go ahead and make all the final decisions on what I did and did not want done to save her. And they were willing to do as little or as much as i wanted but would make sure she was comfortable as possible. She was placed on a ventilator and slipped into a coma. She continued to fight her way through and after a few days the doctors removed the ventilator but she still wasn’t strong enough and if had to be replaced. It was in for a total of two weeks and the next step was a trach. When they removed the vent she able to sustain herself. They all said it was a true miracle.

She did not get the trach placed after all. But the doctors believe that it will happen again and the outcome may not be as good. Gabby continues to amaze me every day. She is the strongest person I know and is my hero. She has fought through so much and smiles along the way. She doesn’t let things get her down. She has such a strong bond with her big sissy Elizabeth that most will never know. They have so much love for one another. I look at them and I see hope, true love and so much more. Gabby has the biggest smile and big brown eyes that will make anyone’s day better and brighter. She has the sweetest laugh of any I have ever heard! I am honored to be able to call myself her  (and Elizabeth’s) mom!!

Thank you for allowing me to share Gabby with everyone.

Easter the Christian Holiday where we celebrate the resurrection of our Lord Jesus Christ ” He is Risen” the time of year I like to re-discover my purpose and do a spiritual spring cleaning. We often find ourselves asking “What is my Purpose” perhaps finding my own purpose in life was by learning, reading and understanding how Jesus knew what his purpose
in life was. When Jesus was crucified on the cross he suffered all that pain with that purpose in mind. It is important to me in my own life to try every day to follow Christ’s example by doing the things that would glorify his name and honor his spirit. That would bring the same joy filled spirit to others that Jesus gave up for me.

My own faith teaches me that we are followers of Jesus, we are his servants we are on a journey here on earth to fulfill his good works. Jesus knew the purpose of his life was to die for us, to die for our sins so that we could have eternal life free from sin, he became the sin of all mankind so that we could be forgiven. It is our job to serve him throughout our lives the way he would of intended and expected us too. Hebrews 12:2 “Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him, endured the cross, scorning its shame, and sat down at the right hand of the throne of God.” Jesus did all that and more for us he was shamed, ridiculed, beaten, crucified, so that we could have joy filled lives.

I like to think  and believe that Jesus wanted and needed us to be the joy the world needed to see and be by each of us being obedient and faithful followers and by serving him. The bible says that we love God because he first loved us 1 John 4:19. It also says “God saved you by His special favor when you believed. And you can not take credit for this; it is a gift from God” Ephesians 28:9. It is by his love and his amazing grace that I have been so blessed by the faith that he has in me and in allowing me to grow, learn and share that faith. Our Joy comes from within, His Joy comes from what we do for Him in glorifying Him and His name.

Spiritual Cleaning or even a Spiritual Awakening is good for the soul, it’s a way to start fresh, clean slate and get back on the right path His path. Some of the things I like to do I found after reading an article by Mary Fairchild so I thought I would share pieces of the article with you as they are ones I find the most meaningful. We all spend time in our home doing spring cleaning, we clean out our pantries, closets, rooms, garages, you name it we clean it out the once a year “Spring Clean”  but how often do we Spring Clean our Spirits I think every year when spring returns and we celebrate Easter and the resurrection that it would is the perfect time to do a “Spiritual Cleansing” of ourselves and lives. So where do you start simple the first step according to Mary Fairchild is and should be a no brainer you start with your heart.

1. Cleanse your Heart-Get your Heart Healthy-One of my favorite bible scriptures for this is Create in me a pure heart, O God,and renew a steadfast spirit within me. Psalm 51:10 (niv)

2. Clean up your Mouth-Deep Clean Inside and Out- The good man brings good things out of the good stored up in his heart, and the evil man brings evil things out of the evil stored up in his heart. For out of the overflow of his heart his mouth speaks. Luke 6:45 (niv) As your heart gets clean, your language should follow. This is not just talking about bad language, but also negative talk and pessimistic thoughts that contradict the Word of God and faith. This includes the challenge to stop complaining. There is nothing more annoying to me than those that constantly profess their love of God and Christianity and then turn around and use inappropriate language, are disrespectful of others, talk and judge that is not what Christianity is about nor is it acceptable behavior. It’s even more disheartening to me that so many individuals as well as young adults and teens behave in this way and that for some it’s perfectly acceptable to the parents. Not in my house is it nor will it ever be. Time for some parents to reign in there kids and teach them what matters. We have a society today of very intolerant people, and spoiled entitled kids. Time to be the parent not the BFF’S . Time to bring Jesus into the family.

3. Renew your Mind-Take out the Garbage-We must enter in our minds and spirits the Word of God instead of the garbage of the world. Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will. Romans 12:2 (niv)

4. Clean Out Your Spiritual Closets- When you clean out your Spiritual Closets by confessing ones sins the heaviness of that sin will be lifted. “Cast your burden on the Lord, and He shall sustain you; He shall never permit the righteous to be moved.” Psalm 55:22 (niv)

5. Release Bitterness – Get Rid of Old Baggage-Bitterness is like old baggage in the attic you just can’t seem to part with. You are so familiar with it, you don’t even realize how it is hindering your life. Get rid of all bitterness, rage and anger, brawling and slander, along with every form of malice. Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you. Ephesians 4:31-32 (niv)

6. Include Jesus in your Daily Life-Walk with Him Explore with Him Let Your Light Shine-What Jesus wants most of all is for each of us to have a relationship with Him, to know Him, to honor Him, glorify Him, to love Him . He wants to know us, to renew us and our spirits. To help us refresh, re-charge. You want daily exercise walk with Jesus best walking partner you will ever find. Let Him be in your life, to be a big part of your life and guide you through the good times and the bad. He will not forsake you or abandon you. Just as we all sometimes struggle with our faith, so did Jesus. In times of need,  look back and see the footprints in the sand to realize that God is, has and always will by our side.

“Footprints in the Sand”

One night I had a dream…

I dreamed I was walking along the beach with the Lord, and
Across the sky flashed scenes from my life.
For each scene I noticed two sets of footprints in the sand;
One belonged to me, and the other to the Lord.
When the last scene of my life flashed before us,
I looked back at the footprints in the sand.
I noticed that many times along the path of my life,
There was only one set of footprints.

I also noticed that it happened at the very lowest
and saddest times in my life
This really bothered me, and I questioned the Lord about it.
“Lord, you said that once I decided to follow you,
You would walk with me all the way;
But I have noticed that during the
most troublesome times in my life,
There is only one set of footprints.
I don’t understand why in times when I
needed you the most, you should leave me.

The Lord replied, “My precious, precious
child. I love you, and I would never,
never leave you during your times of
trial and suffering.
When you saw only one set of footprints,
It was then that I carried you.

7. Learn to Laugh at yourself and at Life-So many of us and people in general take and view our life way too seriously, or ourselves too seriously. Jesus wants us to enjoy ourselves, and learn to have some fun. God made us for His pleasure so we need to let Him see us enjoy the gift of life he gave to us! “Be joyful always”   1 Thessalonians 5:16 (niv)

This Easter season now that Spring if officially here give Jesus the gift of Joy, Joy in you! From my family to yours we wish you a very Happy and Most Blessed Easter with your families!

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Stryder has been the Rochester Ronald McDonald Ambassador for their season of giving in 2011 because of the fight in him and they told us he raised more money than any other in previous years. Even when Stryder was not able to talk (nearly 4 years old), he had a smile on his face. You can see this video showing where he was just a little over a year ago: http://www.youtube.com/watch?v=CXQv4RexKGk – he has been in the local news in several types of media and they did a local Tip a Cop benefit to help raise awareness and funds for a seizure scenting dog. There is something about him that people respond to; he is a sweet natured little boy struggling with epilepsy and its effects.

Stryder has a connective tissue disorder that makes him very hypermobile and often in pain and unable to walk long distances. Stryder was also diagnosed with epilepsy when he was three at the Mayo clinic in Rochester (it is believed that he had seizures since he was an infant) and just last month he was diagnosed with a rare form of epilepsy called Landau-Kleffner Syndrome, only a few hundred people worldwide are diagnosed with this.

Landua-Kleffner Syndrome (LKS) is a form of epilepsy where the child has constant silent seizures, or spikes, while they are sleeping; Stryder was having one or two seizures every second while asleep if not controlled. LKS causes them to lose language skills and they often relapse many times in their life (often every three months), causing permanent brain damage. In Stryder’s case, he was not able to talk until he was almost four and it will cause more delays with his speech and language as he gets older; he may lose everything he has gained if the seizures are not caught in time. Because the seizures are silent, he will have to endure overnight EEG’s often to check for spiking and medications work only for short periods of time. Currently, the spike waves are controlled but breakthrough seizures are an almost every night occurrence.

Adapting to his illness provides unique challenges to Stryder’s family because he has different kinds of seizures, some big and some small and the ones presented by Landau-Kleffner Syndrome are silent and “invisible”. Some of his seizures can be so subtle that even a trained observer has difficulty recognizing them. During these seizures, Stryder loses consciousness and is unable to move or speak but may only appear to be daydreaming. This means that every day activities such as climbing, going down a slide, bathing, swimming, or even eating can become dangerous as a seizure can cause him to fall, become immobilized in water, or choke on food. Stryder is unable to sleep alone for fear of having a seizure, but a seizure dog will help notify Stryder’s parents when he is having seizure so they can change his medications and prevent as much brain damage as possible while also protecting him from hurting himself.

While Stryder has grown both emotionally and developmentally, the challenges associated with LKS and EDS are still ever present in his life. In his daily life, he often dislocates different joints; even walking through a parking lot is difficult and painful at times. Stryder also has many other types of seizures and the risks of his spikes relapsing are an everyday fear. You can read his full story and see pictures on his site: www.strydersstory.com

More than 3 million people in the United States suffer from Epilepsy at an estimated cost of 15.5 billion annually. In the U.S. more than 300,000 people with Epilepsy are under the age of 14 and more than 500,000 are over the age of 65. Epilepsy gets little funding for research in comparison to Autism, Parkinson’s, MS, Alzheimer’s, though more people are diagnosed with Epilepsy than any of these other illnesses. Research funding for Epilepsy is about $35 per patient compared to $200-$400 for the other illnesses.

Sudden Unexplained Death in Epilepsy (SUDEP) accounts for 10% of all Epilepsy related deaths; 85% of these fatalities occur between ages of 20 to 50. SUDEP incidence is approximately 1 in 1000 people with Epilepsy annually more than 10 times the sudden death rate found in the general population.

It is our responsibility as advocates, parents, caregivers, family members, friends of those with Epilepsy to “Talk About It” to bring Epilepsy into the forefront make it both a household name and word to be used, discussed on an ongoing and continual basis. There are many ways and things that you can do to spread awareness and raise awareness for Epilepsy. You can wear purple clothing, make purple ribbons with your children to wear and also make bows to tie around trees in your neighborhoods and communities. Wear purple jewelry, have a mani/pedi day and get your purple on. Replace your outdoor light bulbs with purple ones, release purple balloons in honor of those with Epilepsy and those we have lost to Epilepsy.

Advocacy starts with us, it starts by doing something so simple and watching it spread around the community and globe. Take the time this year to get involved in your own communities and choose to work with an Epilepsy Foundation you feel is truly working for the greater good of the community and its residents. We are all in this together, we are all fighting for the same thing a Cure. Their is no reason that we cannot come together and work together, there is no reason other Epilepsy organizations established or those that are new can not work together and do something to benefit not only both organizations but the communities they live in. As an organization your not doing this for yourselves, your doing this for the families and the children those are the ones you are fighting for, those are the ones that need you the most. Its about the Children, not us!

Here are some other things that you can do with your kids that not only teaches them compassion but that by serving and doing for others will not only reward them with an abundance of blessings but that it will truly make a difference for and in someone else’s life.

Organize a “Purple Day” or event at your child’s school or your local community center.

Ask one of your local businesses that you know well and frequent alot to provide a discount to those wearing purple

Ask your local library to set up a special Epilepsy exhibit or organize a special reading center focused on Epilepsy and the brain

Distribute Seizure First Aid information to schools, community centers, libraries, grocery stores, and physician offices

Organize an Epilepsy walk in your community or at your local school

Ask to speak to your child’s classroom to educate them on “What to Do” if they see a fellow classmate or anyone having a seizure

Some fun activities to do would be:

Hold a bake sale and sell purple cupcakes, cakes, cheesecake, cookies and cake pops

Plant a Purple Flower
Foam brushes
Sponges
Paint brushes
Styrofoam cups filled with water
Paper towels
Newspaper
Flowers, seeds, or small trees

Choose a work area and line it with the newspaper. Place the rest of the craft materials on to the table. Make sure you have water, and paper towels, for cleaning the brushes and/or sponges. Use the brushes, and/or sponges, and the paint to decorate the clay pots. When the paint is dry, add potting soil to the pots. Plant the seeds, or flowers. Add water if it is required to help the plant grow.
Purple Glitter Galaxy Playdough courtesy of the following link http://www.fairydustteaching.com/2011/05/galaxy-playdough.html

PurpleKool-aid Paint
2 packages unsweetened grape Kool-aid
2 cups flour
1/2 cup salt
3 cups boiling water
3 tablespoons oil
Mix dry ingredients together, then add wet ingredients. Paint.

If your child has a Birthday in March consider having a Purple Party and having the guest make a donation to Epilepsy in Lieu of Gifts

Lastly, contact your local media ask them to do a story on Epilepsy and Seizures, to wear purple clothing, interview a family from your community with Epilepsy, write to your local newspapers and ask them to run a story on Epilepsy and Purple Day! The more you talk about it the more you are raising awareness. Get up and out take action and remember we all have a unique gift to offer this world. No matter how little or small what you do makes a huge difference. Let’s everyone rock the purple this year and make 2013 purple day the biggest yet!

May God Bless those whom you love and we are grateful for your support!

Giovanni Giordan.

Gio has been seizing since birth but his parents, Charlotte & Ron, thought he was just having night terrors when they heard him through the baby monitor every night crying out. Then, he had one of the episodes while he was wide awake. Gio was diagnosed with epilepsy and doctors soon discovered he had an arachnoid cyst where the seizures were thought to be coming from. Brain surgery was the recommendation. At 10-months-old, he underwent a difficult and dangerous brain surgery. While the seizures decreased, they couldn’t be controlled with all the different kinds of medicines. As Gio grew, they noticed things weren’t progressing normally for him. Despite physical and speech therapy, Gio couldn’t walk without falling and wasn’t speaking. Then came two more diagnoses that would send any parent into a tailspin: Lennox-Gastaut Syndrome and PDD/NOS on the Autism Spectrum. Gio’s life has been marked by many different kinds of seizures: partial complex, tonic, atonic, myoclonic, absence. In fact, he would seize everyday; 20 to more than 80 times a day. The very few skills he did have started to vanish as did the life in his eyes. Gio had hypotonia and now had a g-tube. With no end or solution in sight, doctors started to discuss “quality of life” issues. It was then another surgery was discussed. No guarantees, just a hope that maybe the seizure activity would be reduced. The surgery that took place was unique for him and the doctors. Whatever happened last July 6th worked. And it worked well. Gio’s last seizure was an hour before surgery began. He hasn’t had a seizure since! He’s walking again, making noises and the life has returned to his eyes. While there are no guarantees as to how long this will last, it’s a great lesson in living in the moment.

Inspired by their struggle with Gio’s special needs, Ron and Charlotte decided to do something for other kids with special needs. And, while his parents do all they can for him, they are left struggling to find and gain access to basic services. One of those is respite care. After getting wait-listed and discovering they were not alone, they took matters into their own hands and. Gio’s parents found other parents in South Central Wisconsin, hundreds of families, waiting for years for something as simple as a few hours of respite to run errands, take a nap, spend time with their other kids…take a small break from 24 hours of caring for a sick child. So, Gio’s Garden was born from parents of special needs children and caregivers who want to help other families who are struggling. Gio’s Garden’s opened it’s doors in June 2012 in Middleton, Wisconsin. It provides free therapeutic respite care in a safe environment where parents of special needs children (birth to 6) can bring them for a few hours a week so they can have a small break. Please “LIKE” them on Facebbook as well Gios Garden | Growing Futures for Special Needs Children In the Madison Area  https://www.facebook.com/giosgarden

The Mission:  Gio’s Garden’s mission as a non-profit organization is to nurture and strengthen families with special needs children (birth to 6 years) by increasing their access to needed services. To learn more about Gio’s Garden or to donate, go to www.giosgarden.org

A Message from the Founder and President of the Epilepsy Warriors Foundation Susan Noble:

Charlotte & Ron Giordan are two of the most selfless people I am honored to know and call my friends. They exemplify to all of Wisconsin and us here at the Warriors Foundation what it means to have giving hearts and Gio’s Garden was created and became what it is today because of who they are. Children with Special needs are Special because of who they are as individuals not because of their Disabilities. Disability is NOT Inability. Parents of Children with Special Needs need support, they need the love and support of everyone so that they can have the time they need to regroup, recharge, re-energize even if it’s something as little as an hour to run errands that means a lot.  Gio’s Garden will allow so many families in Wisconsin to do just that and I am so inspired by Charlotte who is an amazing and wonderful Wife, Mother  and a very special friend to me personally.

Thank you Charlotte and Ron for allowing me to share Gio with everyone and for featuring him on our website. WE LOVE you and WE ALL LOVE GIO!!!!  I urge everyone to checkout Gio’s Garden on Facebook and their beautiful website and if your ever in South Central Wisconsin stop in and say hello! These Children are our gifts but you are their blessings.