Another heartwarming personal story by one of our Warrior Ambassador Families:
Jeff & Stacy
James Age 6
On August 29th, 2009, at 12:30am, James was born via emergency c-section due to lack of movement and the doctors thought maybe he was in distress. When James was born, he didn’t cry, had a two vessel cord, low muscle tone but was shaking his arms. He went to the Lutheran General NICU for further examinations.
James spent 2 months in the NICU & while he was there we found out that he: Had a stroke during my 1st trimester; No suck/swallow reflexes; he has a g-tube to eat; He has a blood clotting disorder called Factor V Leiden; His optic nerve in his left eye never fully developed and he is extremely far-sighted; He has a chromosome disorder called 22q11.2 duplication which means he has an extra copy of a small piece of chromosome 22; He has severe reflux and had a surgery called Fundoplication to prevent severe reflux.
Since October 2009 he has been… Diagnosed with Infantile Spasms; a catastrophic form of Epilepsy; has been on 10 different anti-seizure meds; nothing has worked so far; Diagnosed with Quad Cerebral Palsy in September 2010. This means all 4 limbs are affected; James still cannot hold his head up, sit, stand, walk, eat by mouth, is always hooked up to a monitor to show us his O2 levels and heart rate. James’ brain is consistently seizing, and due to the increase of seizures, he needs frequent suctioning; James will always need someone with him 24/7 but does not qualify for home nursing assistance; He had been admitted to the hospital every November for pneumonia since birth; He had a VNS implanted into his left chest cavity in September 2012. Seizures are still happening anywhere from 80-100+ a day; James was admitted into the hospital October 2012, April and October 2013, April 2014 and February 2016 for pneumonia. This is a struggle we face every year with the change of season.
Financially, what I want or wish for most is paying for natural forms of treatment. The struggle put on parents of children or anyone with special needs is real I want to help my child get what he needs. That includes advocating for natural forms of treatment. As a parent I want more people to be open to education about natural forms of treatment but also to be open to non-medical treatments in general.
We are dedicated to helping our child and with the help given us through the Epilepsy Warriors Foundation’s Ambassador program, we will be able to help him more. If you would like to help us or any of the Ambassador Warrior families chosen through the Epilepsy Warriors Foundations Ambassador Program you can do so through this website. Thank you for your support, understanding towards all of us.