Cerebral Palsy Family

Sasori

New member
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!:D
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!
 

barbara

Pioneer Founding member
Fund raising ideas?

I want to wish you and your daughter the best. Keep your positive attitude. I hope your fund raising is a success. There are a lot of caring people out there, so if you can connect with them, their assistance in helping you fund raise would be invaluable. Do you have any thoughts on what you will do to raise funds?
 

Sasori

New member
Many things!

I'll take this opportunity to reiterate that we are in New Zealand, a country down here in the southern hemisphere, next to Australia, so things work a bit different over here than many may be used to, but some things may be similar. We'd still appreciate any ideas you have - the stranger the better!
We understand we can apply to our national airline to get subsidised seats for the flights to the States. We will be applying for funding from 'Pub Charities'; bars here that have 'pokie' machines (one arm bandits?) are required by law to donate a percentage of takings to charity. Our national lottery 'Lotto' gives away money to worthy causes. We live in a city with a lot of 'old money' and will be writing to solicitors (lawyers) who manage these family trusts, as they often donate to worthy causes. We are considering forming a trust, so that businesses can easily donate and write off for tax purposes, and also so that if we get really lucky and raise more money than required, we can use it to help families in the same position. Of course all the normal things too like raffles, and hassling family and friends!
 

Sasori

New member
Hi there

Thanks for the reply. However, our family prefers to stay away from ESC due to their increased risk of cancer - we've got enough on our plate! Do keep us informed of your child's treatment tho - I'm sure many families are interested. :cool:
 

Sasori

New member
Esc

Hi there
Thanks for the offer, but we are not at all interested in persuing EMBRYONIC stem cell therapy with our child. We are quite happy with UMBILICAL (Adult) and believe this to be a safer option. We do not dispute that the doctor you speak of is getting improvements, and that there is no regression. We are simply very aware of the huge connection with embryonic cells and cancer, as well as it being not as ethical (we're not religious, we just think there's no reason to go there, when science keeps showing cancer connection, it's not worth harvesting embryos and delaying the science moving forward because of ethical stumbling blocks).
Thanks
J
 
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