NWA Baby Suffers From a Rare and Incurable Disease
There are only 300 known cases in the U.S and three in Arkansas. It’s a rare and incurable brain disease known as non-ketotic hyperglycinemia (NKH). One Northwest Arkansas newborn suffers from it and her family is doing everything possible to fight for their baby’s life.
Baby Elizabeth Robertson is not yet a month old and takes medication six times daily to help her survive. One sign of the genetic brain disease is random jerking.
Her mom Jennifer Robertson knew something wasn’t right days after she was born.
“She wouldn’t eat, she wouldn’t wake up, she didn’t cry and they told us to take her straight to the emergency room,” said Robertson.
The mother added, “it’s something you never want to hear is your baby isn’t going to make it.”
Robertson said her daughter will, as she gets older, show signs of developmental disabilities. According to family, the medications have made a huge difference.
“She is alert, she wakes up, she eats, she acts like a normal baby, you know other than the jerking,” said Robertson.
Robertson said, the baby’s medications can only be found in one pharmacy in Fayetteville and the uncertainty of having them available has them frustrated.
“You don’t want her to go without it cause then her levels will go back up and she’ll start being lethargic and not eating and not waking up and it scares me,” said Robertson.
Even though, medication is hard to find, Elizabeth’s mom remains hopeful her daughter will survive from this rare disease.
“Have faith and don’t give up. The doctors were ready for us to give up and she’s still here with us,” said Robertson.
Her mom continues to research and says they will take this incurable disease day by day. There’s a Colorado doctor who is doing research to find a cure. Robertson says, it costs him $70,000 a year for his research.
Click here for more information on this disease.
Baby Elizabeth’s Fundraiser to Help with Medical Expenses
Saturday March 3, 2012
Old Rock School Building
6 p.m. Beans and Cornbread $3.00
7 p.m. Pie Auction
Family asks to please bring a dessert to auction off.
For more information call Vicki Houston (479) 353-0254 or Debra Marion (479) 652-0044.