CHARLOTTE, NC (WBTV) - Meet Kalel DaMan Joseph. Yes, that’s his real middle name.
Kalel is 5-years old. He lives in south Florida, but is part of a national project we hear about in Charlotte.
His family is frantic to find a cure for MPS II, known as Hunters Syndrome. Kalel was diagnosed two years ago.
If Hunters Syndrome sounds familiar, it’s what FOUR other #MollysKids – Finn Muedder in south Charlotte, Easton Walker in Clemmons, NC and Jaxon and Anthony Clark in York, SC – also battle. I met Finn first, and his parents educated us on what Hunters Syndrome can do to a kid. Let me summarize:
- It almost exclusively affects boys.
- Currently less 500 boys in the United States.
- They’re missing an enzyme.
- That enzyme breaks down cellular waste.
- When waste builds up, it leads to progressive damage.
- The damage is throughout their little bodies.
- They develop normally until 2 or 3, then show problems.
- Many start losing skills like walking, talking and eating.
- Most do not live to be a teenager.
It’s not pretty.
But here’s the good news: The families who have little boys living with this rare disease are a ferocious bunch. They’re mobilized and are on a mission to raise $2.5-million.
It sounds like a lot – and is! – but as we’ve talked about before, that’s how much is required to fully fund the first human gene therapy trial in the country for this disease. The trial is already FDA-approved. The families are just waiting for the money to get it going.
The Charlotte families affected have organized together under the name,
The handful of kids in Florida affected are organizing under the name
MPS SuperHero Foundation. That's a 501©3 charity established by Kalel’s parents.
All money raised by either group goes straight to the trial.
Incredible, but the total raised is already over $2-million.
Less than $480k to go. Do the math – that’s over 80% to goal. (When we first started following Finn and Project Alive, the total raised was less than 500K.)
Point being, these families are part of a MASSIVE collaborative effort. This weekend is the next step. Kalel and his family are coming to Charlotte to help host a fundraising kickball tournament here.
WHY CHARLOTTE, you ask?
It's kinda crazy… but Kalel’s older cousin is in elementary school in
Charlotte-Mecklenburg Schools. Her name is Mia. She has been so touched by what he's going through, she went to her school principal and arranged a presentation at school about the disease.
Turns out, Mia goes to Parker’s school.
Parker’s teachers know of #MollysKids and VOILA! One of them encouraged Kalel’s family to email.
You guys still tracking with me?
Now, here are details on SATURDAY’s KICKBALL FUN:
- At Nevin Park.
- Address: 600 Statesville Road in Charlotte.
- Saturday, October 27th, 2018.
- They are “in dire need of teams to participate.”
- Some deputies and companies are creating teams.
- Get your company or neighbors or friends to do same!
- There will be a Kids Korner.
- There will be a food truck and music.
- Register in advance.
- Mia will be there. …And so will Kalel.
Sign up at www.mpssuperhero.org.
Once again, Hunters Syndrome is not just one child. You’ve met Finn and Easton and Jaxon and Anthony in past #MollysKids posts. How remarkable (and smart) these driven families across the county joined together to fundraise as one.
“We advocate for all children diagnosed with MPS II,” Avram said. “Kalel turns 6 in January, we have faced so many challenges. He is no longer progressing as a typical child. His younger brother – a year-and-a-half younger – has already surpassed him cognitively-speaking. Time is working against us. Please help let people know about Hunters Syndrome and Project Alive and this major goal!”
Amazing to say Avram, but $2.5-million. You guys are almost there.
PS: More on Easton Walker >> http://tinyurl.com/EastonWalkerMKs
PPS: More on Jaxon and Anthony Clark >> http://tinyurl.com/JaxonAnthonyMKs
PPPS: Facebook live with Finn Muedder >> http://tinyurl.com/FinnMollyFBLive
**Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there, which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.