Meet Jack

On April 25th, 2019, Lindsey and Jordan Buckallew welcomed their first child, Jack, into the world.

Reflecting on that day, Lindsey shares, “When Jack was born, it was pretty apparent that he was ‘scrunched’. His doctors told us he may stretch out and that sometimes babies were just like that from in utero. Well, he didn’t. Fast forward about two months and his first orthopedic surgeon gave us the diagnosis of Arthrogryposis, Hip Dysplasia, Scoliosis, and Vertical Talus Bone. He was also being treated for Torticollis.”

The family was then referred to another surgeon and eventually a geneticist which ultimately led them to a new diagnosis, Central Core Disease with variants on the RYR1 gene.

Central core disease is a disorder that affects the skeletal muscles used for movement, therefore causing muscle weakness.

When Jack was seven months old, he had his first surgery to put his hips back in place. This included two spica casts. Eight months later, Jack had another surgery to have his vertical talus bone fixed. For this surgery, he had serial casting before and had a hard cast after.

Currently, Jack is undergoing the process of Mehta Casting for his scoliosis. September 2021 marked an entire year in a cast.

“This is our future for a while because his curve isn’t improving but he’s too small for the surgery. The casting has slowed the curve, and we’re hoping for a brace this summer because he’s a water bug and we miss it,” Lindsey shares.

Jack is currently on his seventh Mehta cast and has had five soft castings for his vertical talus bone. While this is a lot for any almost three-year-old, this is all Jack knows. Lindsey shares, “He’s always been in some type of cast.”

For therapy, Jack sees a physical therapist, speech therapist, and an occupational therapist for feeding.

The Central Core Disease causes Jack to have low muscle tone, so while he doesn’t bare weight yet, the family is seeing improvement. Jack sees his speech therapist weekly, and the family is starting conversations about getting him an AAC device.

Lindsey shares, “Despite having good receptive language, he is not speaking yet. It can be tricky, and as a mother, you just want to meet your child’s needs. He knows some sign language and shakes his head for ‘no’ and uses his hands for ‘yes’.”

On a regular day, you can find Jack zipping around his home on his wheels, playing with cars, throwing a ball or listening to music. He’s known as being a very happy little boy who enjoys his independence and being around other kids.

Time to get loud shouters!

Throughout the month of April we will be shouting loud for Jack!

So click here to shop now where every purchase in April will be used for intensive physical therapy programs not covered by insurance.

To help support kids like Jack every month, click here to start a monthly subscription.