HELENA, Ala. (WIAT) — A pet hedgehog is waiting at the end of the road for 8-year-old Pippa Daspit.
Pippa, a smart, musically inclined, animal-loving third grader at Helena Intermediate School, made her family feel like they were “living in a Broadway musical” every single day.
Then — suddenly — she lost her ability to walk, talk, and even see at some points, leaving doctors confused and her parents without a concrete diagnosis of their daughter’s condition.
Tommy and Kelly Daspit said the battle began in January when Pippa started complaining of eye pain and having sudden vision problems, often describing it as “looking through broken glass.”
Doctors were worried that Pippa may have a brain tumor, but after several tests and scans, they found nothing abnormal.
Baffled but grateful that Pippa could still function normally aside from her vision and occasional (but severe) bouts of eye pain, her parents said they just “lived with it” for a couple of months. Despite dozens of doctor visits and missed school days, Pippa pushed through.
In May, Pippa asked for a skateboard for her birthday. She got it. She had a reptile-themed party with all her friends. All was seemingly back to normal. Until one August morning.
“We were getting ready to go to school, and she just fell to the floor, and she hasn’t walked since,” her mother said.
Pippa and her parents returned to the hospital, where she would have bouts of excruciating pain that would attack her whole body for 16 to 18 hours at a time.
After running test after test, doctors were still unable to give Tommy and Kelly a clear answer on what was happening to their daughter, finally concluded that Pippa was suffering from some sort of functional neurological disorder.
The disorder was explained to Pippa as the brain not being able to figure out how to talk to itself correctly. This type of disorder has been seen in other patients, but never in someone as young as Pippa.
“We keep running into the issue that she’s only eight years old,” Tommy said. “We’re trying to find a hospital in this country that will take her and diagnose her properly, or just work with her symptoms because there’s nowhere like that in Alabama that has an inpatient program for these symptoms at her age.”
Pippa’s condition worsened about a month later when she suddenly lost the ability to speak mid-sentence while on the way to a restaurant with her family.
“She typed out on her iPad, ‘I can’t speak,’ and she hasn’t since,” Kelly said.
Tommy and Kelly said the most difficult part of this journey is that they can’t fully explain to Pippa what is happening to her or when — or even if — it will ever stop. But, their 8-year-old daughter is surprisingly understanding.
“Even though all of her body functions seem to be shutting down, she’s very bright and understands what is going on,” Kelly said. “She also understands that we don’t understand… I just tell her that we’re not going to quit fighting for her and we’re going to do whatever it takes to find out what’s wrong and get help for her.”
Pippa is resilient most of the time, her parents said, but inevitably has her moments of weakness.
In one of those moments, Kelly said her daughter was communicating with her through writing on her iPad when she wrote: “I want to get better, but every week I get worse, and now I feel like I have no purpose.”
One of the things that keeps Pippa going is that her parents promised her a pet hedgehog come November.
Several of Pippa’s friends still come by the house occasionally, but her parents have had to explain to them that just because Pippa can’t talk or walk right now doesn’t mean that she’s not the same person.
“Pippa’s still in there,” an emotional Kelly said. “Sometimes she’s just trapped inside herself.”
On top of everything, Pippa’s parents are continuing to work full-time: Kelly as a teacher and speech pathologist with the Jefferson County School System and Tommy as an architectural photographer that also works as a freelancer.
“I actually do speech therapy, and I feel like I should be able to help her. But I’ve never worked with or seen a child that has the same problems as Pippa. So it’s just very hard,” Kelly said.
This year is Kelly’s 25th year of teaching. She had planned to retire from the school system to stay home with Pippa after she finished her contract, but now, she said that’s not possible without donated sick days.
Kelly has run out of leave time and has also borrowed the maximum number of days from the state’s sick leave bank. She has since asked that Alabama teachers or state employees enrolled in the leave bank donate any time they may have available.
So far, she said she has had 25 hours donated, which is enough to get her to the end of December. She’s grateful for what she’s received, but it’s not enough. She recently made the decision to go on family medical leave.
Even though they try their best to remain positive and strong for Pippa, Tommy and Kelly say they also break down occasionally.
“Sometimes I have to go and find a room by myself and just cry,” Tommy said. “It’s definitely been one of the most difficult things I’ve had to deal with, but you know, we have each other.”
Pippa is not the only child the Daspits are having to care for. Their 18-year-old son Wilder, a senior at Helena High School, has also been impacted by Pippa’s condition.
“I’ve seen him cry more this last month than I have in his entire life,” Kelly said.
The two often enjoyed playing video games together and visiting a local frozen yogurt chain to spend time with one another. Kelly said that growing up, the two were typical brother and sister, bickering here and there. Now, Wilder just wishes he could hear his sister’s voice again.
Kelly Daspit began sharing Pippa’s journey online in hopes of finding help for her daughter.
“Through that, we’ve garnered so much support financially and informatively,” Kelly said. “People from all over the world as far as Peru are reaching out to us, praying for us, sending cards and letters. It’s been overwhelming and humbling to say the least, and we are just so grateful.”
A ray of sunshine in the storm came when the Daspits received a phone call saying that Pippa could begin occupational and physical therapy five days a week at Children’s Hospital starting Nov. 14. If she completes it successfully, Pippa gets the one thing she’s been wanting from the very beginning of this journey.
A pet hedgehog.
Monetary donations to the Daspit family can be made via GoFundMe, Venmo (KellyDaspit) and Cash App ($KellyDaspit). If you’re a state employee who would like to donate time off to Kelly Daspit, you can fill out the form below.