Caleb's Chance: Va. mom seeks help for ill son
A King George, Virginia mother needs your help to give her son a second chance at life.
Caleb Johnson, 6, has a rare-terminal illness with no known cure. His family is trying to raise money to fund a clinical trial to beat Batten's disease.
Caleb just celebrated his sixth birthday and its Christmas.
"He loves all the lights; he likes to help put up the ornaments and to look for presents under the tree," his mom, Ashley Johnson said.
Making the holidays and everyday merry and bright for Caleb is job one for his mom and Travis Holman, the man who's been a dad to him since he was two years old.
"He's the light of my life. I can't imagine doing anything but being his mom," Ashley said.
Putting a damper on the Christmas cheer is the realization that Ashley may only have a few more years left to celebrate with her son.
Caleb has Batten's Disease. It's a fatal, inherited disorder of the nervous system.
It came as a shock because there was no history in the family of this genetic disorder, and everything about Ashley's pregnancy and delivery was normal.
The once vibrant little boy, who loved to run, swim and play with school friends, began to change before his third birthday.
"...When Caleb was two and a half his motor skills, not gross motor skills, but fine motor skills were not coming together as quickly as I thought they would and his speech was not developing like a typical two year old."
Doctors thought it was autism. So, they began at least 20-hours a week in a series of early intervention therapies, plus pre-school.
"Every day he works so hard just to do things every other parent, other kids take for granted."
A genetic test revealed Caleb has the CLN 8 gene mutation that causes his type of Batten's disease--- which occurs in maybe two to four of every 100,000 live births in the U.S.
“They start having seizures; they lose their ability to motor plan, walk, talk and a lot of time vision impairment is common as well."
There is no cure for Caleb's disease, but Ashley and Travis have not given up. They're placing their hope in funding a clinical trial for his specific gene mutation.
Working parallel with another family that's already raised $25 million, Ashley started the Caleb Chance Foundation. To get the clinical trial up and running, they must raise at least $3.5 million by next year.
And they are asking for your help.
"Every dollar counts, every dollar matters...determined to get it done."
They have to act quickly to give Caleb a second chance at life, because children with his strain of Batten's usually live to be 8 to 12 years old.
"Caleb is 6 now. It's kind of hard now because every birthday you want to celebrate your child getting older. but getting older right now is not the best,” Ashley said. "I just wish I could keep him little, slow time down."
If you'd like to help fund a CLN8 gene therapy trial, click here https://www.breakbatten.org/