Fundraiser For Little Girl With Rare Disease
Burley, Idaho (KMVT-TV) A local family is raising money to help pay for a surgery that may mean the difference between life and death for their youngest member.
8–year old Jenna Knight has a rare disease.
"It's called Leber's Congenital Amaurosis Congenital Pigmentary Dystrophy," said Jerrie Cunningham, daughter has rare disease.
It's a genetic disease that affects only one in every one million girls.
Jenna was born blind as a result and in recent years, her kidneys have started to fail her.
She is scheduled to have a kidney transplant in October thanks to the generosity of a family member.
"We have a donor. It's her step–sister that's going to donate the kidney to her. They have the exact same blood type so we're very excited about it," said Cunningham.
But, the upcoming surgery and monthly medical bills means Jenna's family and friends are working overtime to raise money.
"She's on eight different medications a day that she takes. And, then she gets and injection every other week. And, we pay for 6 of those medications a month. We're spending about $800 month on medications," said Cunningham.
Doctors placed Jenna on a feeding tube to help her gain weight before the surgery.
"At 8:00 p.m. she gets hooked up to a feeding machine through the tube her and it feeds her while she's sleeping. So, she can gain the extra weight she needs,” said Cunningham.
As Cunningham explains, Jenna is very small for her age.
"An average 9–year old is weighing anywhere from 50 to 60 pounds and she's 37.9 pounds right now," said Cunningham.
A small wonder looking for a big miracle.
Saturday's car wash in burley is just the first step in a series of fundraising events.
There will also be a benefit yard sale on July 14th at the Burley United Methodist Church, and a concession stand set up at the Spudman Triathlon.
Also, if you would like to donate, but can't make the events there's an account set up at D.L. Evans Bank under the Burley United Methodist Church for the benefit of Jenna Knight.