To raise awareness about gastroschisis & fund a research grant to find the cause(s) of this birth defect
My daughter was born in September of 2005 with a rare birth defect called gastroschisis, which is where the intestines protrude from the abdomen at birth. 30 years ago this birth defect was fatal, but thanks to modern medical technology children born with this have a good chance of survival.
Ashley spent 6 weeks in the NICU & has had 2 surgeries to date, but she is a happy healthy child! :) Some children with gastroschisis require bowel & liver transplants, are unable to eat normally, have lifelong medical problems, & many die. Thankfully Ashley has been spared those issues, although she will always be at greater risk for certain problems than most people will.
The incidence of gastroschisis is increasing at an alarming rate across the country, & nobody knows why. It has gone from less than 1 in 10,000 births to more than 1 in 2000 in certain areas! Research is not being conducted because there is no funding, & as it is still considered a "rare" disease, gastroschisis is one of the last to receive funds. I am determined to fund a grant to help find the cause in my lifetime.
I donate to a company called NORD (National Organization of Rare Disorders) to help fund a grant. $35,000 is required to start one, & to date we're up to $8,500. Every dollar counts, & the full donation is tax deductible. If you're considering charitable donations, please consider gastroschisis.
PLEASE NOTE : When donating, you MUST specify "gastroschisis" or "in honour of Ashley Neal" or else the money will go into general funding & not to gastroschisis. Thanks!
1. Fund a research grant to find the cause(s) of gastroschisis & ultimately prevent this birth defect altogether
2. Raise awareness about this birth defect & have government agencies look into possible environmental links
3. Create a support & information network for gastroschisis survivors as well as family, friends, expectant parents, etc.