Anna Elder hopes to get special wheelchair, but needs help with funds
The wheelchair would allow Anna to drive using her eyes.
CATAWBA COUNTY, N.C. (WBTV) - This Catawba County now 9-year-old has been one of our #MollysKids since 2016. She lives with a rare illness called Rett Syndrome. This update on Anna Elder is a longtime coming.
From May 2019 until May 2020, her family says it was an up-and-down roller coaster, mostly because of seizures.
After two hospital admissions in early 2020, Anna’s family worked with doctors to get a VNS (Vagus Nerves Stimulation therapy). VNS is approved by the FDA for people over the age of four. It hopes to prevent seizures by sending regular, mild pulses of electrical energy to the brain through the vagus nerve.
In March of 2020, Anna got her VNS placement on the calendar. They were scheduled to get this surgery to hopefully help her seizures that were causing so many problems.
Anna’s surgery was postponed.
Finally, later in 2020, Anna was able to have surgery. Some obstacles popped up in the beginning with her VNS but now, her mom says, the VNS is working as it should in Anna.
“While she still has some seizures, the device stops them and we are not seeing clusters,” her mother Crystal Elder said. “She only had one day since getting the VNS that my husband, Jason [Anna’s dad], had to give her rescue medications. I was hesitant to put her through the VNS surgery—especially during a pandemic—but I’m grateful for the doctors and my husband who reassured me it was a good plan. They were right. It was.”
In the past few years since her last #MollysKids update, Anna was also granted a Make-A-Wish Central and Western North Carolina.
This sweet girl, who loves the water, wanted a pool. She now has a huge above-ground pool with a mechanical lift. Her uncle, her Papaw, cousin, and brothers helped build a deck around the pool so they can roll Anna in and out safely.
“She is so happy in the water,” Crystal said. “The bigger the splash, the bigger her smile. Along with the pool, Anna also has a Tobii Dynavox device, which is a computer/communication device combo she can operate via eye gaze. Anna had several trial sessions and the Tobii combo picked up Anna’s sense well, so she was able to ‘drive’ it where she wanted to go.”
“And as part of the Tobii combo, you have something called the LUCI system. LUCI is a safety system to prevent Anna from driving down stairs or off a deck, or into walls. Clearly a necessary feature to keep her safe. Well, we did the paperwork and jumped through hoops—all with our hopes up—knowing if we could figure out to get a Tobii/LUCI combo, it’s change her life.”
Turns out, Crystal says, insurance denied the wheelchair. It was crushing for all of them.
“To date, no one in North Carolina has gotten approval for this type of wheelchair, especially if they have Medicaid,” Crystal said. “It’s new and I guess it’s easy to sit behind a desk and stamp ‘denied’ on a piece of paper. But, we haven’t given up and are exploring all options for funding the wheelchair and technology.”
“It is frustrating though. If anyone who reads about #MollysKids knows of grants or funding options out there, we’d be grateful to know of them and gladly research every suggestion.”
Besides fighting for the wheelchair, Anna’s parents also went to the RettSyndrom.org national event in Nashville at the end of April.
“It was 2-and-a-half long days filled with amazing information,” Crystal said. “We learned so much about communication and education. What stuck with me was someone saying, ‘Being non-verbal is not the same as having nothing to say.’ Anna actually has a lot to say. She can express herself even without her “voice” to tell us what she needs. We continue to learn more about how to make her more effectively functional and know there is so much trapped inside her brain.”
There is no cure for Rett Syndrome. However, at this conference last month, it was announced possible treatments are in the works and lots from gene therapy is being researched. Some trials have already taken place.
“As hopefully as we are, we know we’re still years away from anything definite,” Crystal said. “But there are federal dollars going towards research, aimed at Rett Syndrome. For that, we are excited.”
For families that have children living with a rare syndrome, networking can be everything. Hearing form others matters.
Hi, Anna. Always a good time to get an update on one of our amazing #MollysKids, and you are certainly one of them. Few more pictures below.
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