Molly’s Kids: 6-year-old Cayden Cook in Statesville, diagnosed with a rare neurogenetic disorder

Molly’s Kids: 6-year-old Cayden Cook in Statesville, diagnosed with a rare neurogenetic disorder
Cayden Cook (Source: Stephanie Cook)

STATESVILLE, N.C. (WBTV) - Loads of political talk yesterday… and more today… so I’m taking this morning moment to provide a breather. Welcome to a March 3rd story with zero political impact, hopefully able to start off your Super Tuesday on a non-argumentative foot.

Meet Cayden Cook, newest one of our amazing #MollysKids.

Cayden is 6-years-old and from Statesville. His mom says her kindergartner enjoys listening and singing gospel music, and his favorite artist is Alan Jackson. He enjoys reading a variety of books, never meets a stranger, and is quick to give hugs.

“Last year though, our son was diagnosed with TBCK,” Stephanie Cook said. “TBCK-related encephalopathy is a rare neurogenetic disorder. It is an autosomal recessive disease, meaning it's caused by genetic mutations usually carried by both parents. TBCK is associated with slowed mTOR functioning (a biological pathway). The mTOR pathway helps to regulate cell metabolism, growth, proliferation, and survival.”

A mouthful of words to basically say this:

Cayden lives with brain abnormalities, intellectual disabilities, epilepsy, and autism. He is currently only one of 35 reported cases of TBCK worldwide.

“We have had Cayden in constant therapies – OT, PT, Speech and Feeding therapies – since the age of two,” Stephanie said. “We are currently working towards getting him an autistic service dog.”

As anyone who has ever tried to get a certified, legitimate service dog knows… the cost is outrageous. Stephanie said they’re working on that.

“We’ve done all the research and know it would be beneficial to him because of his sensory overload,” she says. “A service dog might help calm and relax him. These types of dogs can lay on the pressure points of a child’s lap to help to release anxiety. They can also interrupt repetitive behaviors. In Cayden’s case, this is usually clapping or humming.”

Stephanie said she’s also hopeful a service dog could help her son with balance and guiding him around obstacles.

We noticed at the age of 2, he was delayed with his speech and walking,” she said. “This is what prompted us to start those therapies. He was making progress in all areas. It wasn’t until he went to a genetics doctor around the age of 5 that we found out about the TBCK.”

Stephanie says the end game for Cayden is always the same: Therapy. Therapy. Therapy. Currently there is only one hospital handling research related to TBCK, and that’s the Children’s Hospital of Philadelphia.

“Cayden continues to grow and show great strides in his progress,” Stephanie said. “Everyone he meets falls in love with him because he is such a loving child. He really makes a lasting impression.”

Stephanie will be reading all comments below, hoping to hear even more bright ideas on how to get a specialized service dog… they’re well into the process, but she's open to reading any advice because it’s just not easy.

“Thanks for sharing our son,” she said. “He is really a remarkable child.”

This picture is beautiful. Welcome, Cayden, to #MollysKids.

-Molly

*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.

Copyright 2020 WBTV. All rights reserved.