Paxton Purdy is autistic and while he has always required help with feeding, dressing and other functions, his parents Paul and Kristin had no reason to think his life was at risk.
Paxton Purdy, a 7-year-old Murrieta resident, has a rare genetic mutation. (Courtesy of Paul Purdy)
At 5, Paxton started having seizures due to a rare genetic mutation that has led to multiple hospitalizations, severe epilepsy and other challenges. Not only is his life in jeopardy now, but he needs even more help to do basic things.
“It’s one thing to grieve his challenges and know that he won’t have a typical childhood or live independently,” Paul said. “It’s quite another to realize his continued existence is a nonstop challenge.”
There is hope. The family needs to raise $3 million for a gene therapy and clinical trial through the University of Massachusetts, Worcester Chen School of Medicine.
The family set up a website and a statement there speaks to what the Purdys face. “While this offers a ray of hope through the clouds of despair, it also creates additional stress and a Herculean challenge to raise the funds needed to help Paxton.”
As a substitute teacher in Murrieta, I’ve witnessed the changes in Paxton. I saw him in a special education class a couple years ago and he looked like the lively kid featured in the “Paxton’s Story” posted by his parents on YouTube. He was able to walk, feed himself, and do things.
These classes have fewer kids and the kids make more of an impression. Paxton is the kind of kid who’s memorable, in a good way.
After talking to Paul recently and hearing where Paxton went to school, I dropped by his classroom at Buchanan Elementary while I was substituting. He’s now in a wheelchair, and the boy who once looked so alive is transformed by his condition and needs dramatically more help. Now imagine what his parents endure.
“Physically it is very challenging as he is getting bigger and heavier,” Paul said. “But mentally and emotionally, it is even more difficult.”
The Purdy family, including his 4-year-old sister Aria, have raised about $40,000 from a GoFundMe campaign. A message on the homepage from a donor, David Ortega, says he’s “praying that the Lord will heal Paxton and give peace and comfort to your entire family.”
Paul, 44 with a background in school counseling, now stays home with the two kids because they need extensive care. Aria, 4, is also autistic. Kristin, 42, is a clinical psychologist in Temecula.
As might be expected, the entire family has been affected by Paxton’s travails.
“She (Aria) is too young to understand what is going on,” Paul said. “Lately, she wants to wear his clothes and I think that is part of her way of being close to him.”
Paxton enjoys watching videos, playing with toys and swinging at the park. “Despite his significant challenges, Paxton is a very happy boy who loves being with his sister, friends at school and family members,” his dad said.
Related Articles
Stroke survivors and caregivers share experiences, camaraderie at Murrieta support group
What do you know? It’s been 35 years since I started writing this column
Temecula resident helps veterans thrive — with pickleball
Temecula’s new Margarita Recreation Center puts out a welcome to all
Temecula marks 30 year-connection to its sister city in Japan
The Purdys say research into Paxton’s condition will help at least one other child in Alabama and potentially others. They’ve also bonded with other families who face the same challenges.
“We are confident that we can get there in the next three years with our fundraising ideas and all of the support that we have,” Paul said. “We can’t do this alone and we would love for the community to join us in paving the way to breakthroughs in genetic research and developing gene therapies.”
They have the ultimate motivation for a parent, helping a struggling child.
“We are determined to offer him the longest and healthiest life possible,” Paul said.
Website: https://cureclcn6.godaddysites.com/GoFundMe: https://gofund.me/a0121004YouTube: http://www.youtube.com/@CureCLCN6
Reach Carl Love at carllove4@yahoo.com.
