Oakley Henderson is a lot like most four-year-olds. She enjoys watching cartoons on her iPad, playing with other kids and looking forward to her first day of kindergarten. However, her life, so far, has been far from normal.
She was born with a rare condition called congenital nephrotic syndrome. Her mother, Stephanie DeBord, learned about the condition when Oakley was two months old. DeBord says she knew Oakley would eventually need a kidney, but she wasn’t expecting it this soon. They’re failing, leaving Oakley taking 25 medications each day.
She doesn’t know how to eat food as she’s been fed through a tube all her life. She’s also unable to spend a lot of time outside for fear of dehydration or possible infections. Oakley is in feeding therapy, speech therapy, takes a growth hormone, blood pressure medicine, undergoes multiple shots every day, and is fed through a tube.
Her family hopes for a living donor, as they’re expected to last longer in a new body than a deceased donor kidney.
In the coming weeks, both of Oakley’s kidneys will be removed and she will undergo dialysis. Her mom’s hope is there will be a donor lined up at the same time, so when Oakley is ready for surgery, her donor will be, too.
According to the Facebook group, an eligible donor for Oakley must:
- Have an O positive or O negative blood type
- Be between 18 and 35 years old
- Not have diabetes, high blood pressure, or a history of cancer
DeBord explains the donor’s medical expenses are covered under her daughter’s insurance.
The page “O+ for Oakley” has gained a lot of support from multiple states. In one of the posts, shared more than 500 times, there is a link to the possible donor form.
DeBord says she never thought her daughter would become one of those stories on Facebook that gets shared hundreds of times, but she says, “it matters and it helps.”
The online form is a Vanderbilt Transplant Center donor form. DeBord explains if you meet the criteria, the center will reach out to you once by phone.
The next step, she’s learned, is the possible donor is sent a blood kit. A person is then responsible for going to a local lab, having the blood drawn and they’ll send it to Vanderbilt. She says she’s thankful for every share.
“There is somebody out there who has the answer to the next 10 years of my child’s life and every share is a change to find it,” she added. “I want her to live her life to the fullest. I want to know I did everything in my power to make sure she was okay.”