Zane is in need of a special type of walker that costs $5,000. As well as making a few adjustments to their house to make it handicap accessible. His insurance company however would rather put him in a wheel chair. Please open your hearts to this family who refuses to give up on their dream to see him up and walking!
Here is his story,
Zane was two and a half months old when he had his first seizure. That day, Christmas of 2011 his family spent in the hospital. They were told that the right side of his brain was not fully developed and that Zane would never be a normal child. They diagnosed Zane with "infantile spasms."
Zane was prescribed a medication to control his episodes.
Not long after coming home from the hospital Zane was admitted again still having 15+ episodes per day.
Zane was sent home with a second medication and shortly after developed a different type of episode.
A month later, January 2012 he was admitted again. This time Zane was put on the "Ketogenic Diet" assuming the specialist knew best. Zane's mother Erika and grandparents were scared, and concerned but they were told, "This is what we are doing it's a miracle drug his seizures will go away."
Zane's seizures never went away on the Ketogenic Diet. Zane stopped gaining weight, and lost all of his muscle tone. Anytime they called to consult with his provider they would up his medication dose and calories over the phone with no concern of seeing him in office.
Zane was on this diet for about 10 weeks (the proper amount of time for the diet to work its course).
Now, five months old with a 2000 calorie intake per day. Still having seizures, loosing more weight, and hardly any muscle left.
March 2012 Erika & her parents took matters into their own hands. Erika noticed Zane was far from himself one day, all he wanted to do was sleep. Zane's grandma having medical knowledge knew they needed to take him in.
Baby Zane was admitted right away. Erika and her family said it was one of the scariest days of their life. At 6 months old Zane was only ten pounds.
That's when his family decided to take action and quickly replace his neurologist, not the diet nor the medications were benefiting Zane.
Erika felt as if her son was a science experiment for this Ketogentic Diet.
As soon as Zane was off the Ketogenic Diet he gained weight rapidly!!
Having a new specialist they soon found out Zane's spasms were not linked to a genetic issue or infantile spasms. Zane is epileptic, and he became malnourished and weak because of the unprofessionalism of his previous doctor.
Zane's new neurologist has been a huge blessing to their family. Zane's seizures are very controlled now. He is currently on formula and baby food because of the muscle tone lost from the Ketogenic Diet.
Zane was seen at the Epilepsy Center in Denver, Co and is a candidate for brain surgery, but the family has chosen to hold off because he is doing so well and there are a lot of risk.
Zane goes to physical therapy and water therapy, improving and building muscle every week! His physical therapist suggested getting a walker for him to use daily because it has been helping him so much and so quickly at therapy. He started using a walker about six months ago and has gotten so much stronger. With some assistance he sits down and stands up. His head control has gotten much better, as well as his trunk strength.
Zane's physical therapist wrote his insurance a letter to try to get a "gait trainer" (the walker) for Zane. Denied even with the physical therapists recommendation, there was not enough medical proof that it would be beneficial for Zane, and is suggested a wheelchair.
Seeing so much improvement his family refuses to give up on the idea of a walker.
Everyone learns at thier own pace. Zane is two years old now, a miracle baby. He is a very smart child with a great, supportive family keeping him happy. Not just his mom but his amazing grandparents that help Erika out without question.
A little fun fact, Zane and his grandpa are best friends. He also has some pretty great uncles and aunts to play with. Erika told me that ever since Zane met his new baby cousin that they notice him trying to interact.
Erika and her family have been so positive, and them having this dream for Zane, I want to help them make it a dream come true!
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