My name is Janine and my daughter has severe CP, microcephaly and epilepsy. We live in New Zealand so are MILES away from where everything is happening but are dying to get over there and get some treatment and have the application etc underway. The big frustrating part will be fundraising to get over there! Our daughter has severe CP, at 19mths now she is unable to roll, crawl, or speak, and only eats soft lumpy food and thickened liquids - however, they did tell us she'd probably never eat at all, let alone walk or talk! So we're doing pretty well really! She smiles her wee face of and started laughing about a month ago, which almost makes us cry each time LOL!
So we have big but hopefully realistic hopes for stem cell therapy. We're not expecting miracles but we really hope to see a clear improvement, perhaps for her to balance enough to sit by herself, or to see a bit better so she can focus on our faces, or for her swallowing to improve so she can have a more interesting variety of foods, or, do we dare hope? - a reduction in her seizures. We understand any improvements will probably (most definitely!) be less than we hope for, but any improvement is the start of a positive road for us. The various therapies she receives help to teach her how to USE the brain she has, but this could give her 'new' brain to use! (In a way). How amazing! So why not? Hope to be back to you all with some AWESOMELY POSITIVE NEWS in the not too distant future!
So we have big but hopefully realistic hopes for stem cell therapy. We're not expecting miracles but we really hope to see a clear improvement, perhaps for her to balance enough to sit by herself, or to see a bit better so she can focus on our faces, or for her swallowing to improve so she can have a more interesting variety of foods, or, do we dare hope? - a reduction in her seizures. We understand any improvements will probably (most definitely!) be less than we hope for, but any improvement is the start of a positive road for us. The various therapies she receives help to teach her how to USE the brain she has, but this could give her 'new' brain to use! (In a way). How amazing! So why not? Hope to be back to you all with some AWESOMELY POSITIVE NEWS in the not too distant future!