Remarkable. Resilient. Hard-working.
These are just a few of the words used by Josh Yacklin’s providers to describe him.
Now 20, Josh has been challenged pretty much from his earliest days with neurofibromatosis, a condition which causes the growth of tumors along nerves in the skin, brain and other parts of the body. They can be benign or malignant.
Josh estimates he has had hundreds of plexiform tumors in his short life. He has several currently in his brain that are stable and being monitored.
Things are going well right now after a rough end to his teen years.
He’s been working with his dad at MK Architectural Metal for a year, fabricating aluminum used in commercial construction.
He’s also enjoying his role as an adult Boy Scout leader. Josh has been active in Cub Scouts and Boy Scouts in Magnolia and now Carrollton since he was young. Although the pandemic thwarted his plans to earn the highest rank of Eagle Scout before reaching the age of 18, he recently earned his vigil the Order of the Arrow, a recognition for those who exemplify the Scouting Oath and Law in their daily lives.
On a recent visit to Akron Children’s, where he saw multiple providers in the NeuroDevelopmental Science Center, Josh and his mom, Jennifer, shared the ups and downs of his life with neurofibromatosis.
Josh was 3 when the diagnosis was confirmed in 2003 through genetic testing and, sadly, some of his earliest memories were of being teased in kindergarten.
Josh has had two craniotomies to remove brain tumors one in the front lobe in 2016 and one on the auditory nerve in 2017.
When he was 16, a tumor settled in the nerve of Josh’s left ear, causing permanent hearing loss. But he uses a hearing aid which pulls sound from his right ear, creating a “surround sound” effect.
He had his first orthopedic surgery in middle school, getting a growth plate shaved on his left leg as it was growing faster than his right leg.
“That’s when the plexiform tumors did their massive growth,” said Josh. “Things got difficult after that. My foot was so big I needed specialized shoes that cost $1,500 every year. Insurance only covered part so that pretty much ate through the family paycheck.”
Pediatric orthopedic surgeon Dr. Mark Adamczyk followed Josh through these years as weight and size of these tumors took their toll on Josh’s mobility. They talked about the pros and cons of amputation, but Dr. Adamczyk advised putting it off for as long as possible.
Then, there was the accident. Josh and a friend were riding a four-wheeler when they hit a rock. The fall caused one of tumors in his foot to burst. He ended up in Akron Children’s Burn Center with an infection comparable to having a third-degree burn.
Amputation (from just above the knee) now seemed like the best option in 2021 – with a skin graft on the horizon and an ultrasound showing tumors now overtaking muscles in the leg.
“I think I made the right decision,” said Josh. “My friends think I move a lot better than I used to because I was basically trying to drag along a 15 to 20 pound leg around,” said Josh.
Josh enjoys an active lifestyle, especially hunting, all things outdoors and Scouting. He worked his way from Tiger Scouts to through the ranks of Boys Scouts. He is now an adult volunteer with Troop 141 in Carrollton.
“I like camping, I like the discipline I’ve learned,” said Josh.
“Josh has had quite a few challenges in his life, but he is quite resilient,” said pediatric psychologist Chelsea Weyand. “He’s really a remarkable young man.”