“Love.” This is the word that mother-of-five Tamika offered without hesitation when asked to describe what caregiving means to her. When you speak with Tamika, she radiates a fierce, selfless love for her children. Caring for her son Markel, who is living with an incurable degenerative disorder, means little sleep and a lot of worry for Tamika.

As part of our spotlight on caregiving, we have begun a multi-part series featuring Spreading Sunshine families. Caring for children with complex medical needs impacts caregivers’ emotional, mental, and physical health. These stories will shine the light on the unique challenges these families face so that communities can better provide empathy and practical support.

Markel’s Journey: A Search for Answers

Markel is the youngest of Tamika’s five children. His siblings include Imani (25), Marquise (21), Tamia (17), and Cameron (9.) Her granddaughter Ivi, three, also lives with her.

The first year of Markel’s life was pretty typical: he crawled, sat up, attempted to pull to a stand, and drank from a cup. He cried a lot and suffered from ear infections, but otherwise seemed to be reaching his milestones.

This all changed when he was seen at the hospital for an ear infection. A nurse had concerns about his eyes and suggested Tamika schedule an MRI. The scan revealed he had a small cerebellum, the portion of the brain responsible for walking, balance, and complex motor functions. A neurologist recommended that he be monitored and seen again in six months.

During that time, Markel stopped crawling and lost the one word he knew: Mama. Despite weekly therapy, he made no progress. The seizure activity that had previously gone unnoticed was obvious now.

When he was three Tamika finally got an explanation for all of the changes in Markel when genetic testing revealed that he had Infantile Neuroaxonal Dystrophy (INAD), a disorder she’d never heard of.

“It seemed from that point on there wasn’t any more good news for Markel.”

One in a Million: A Rare (and Heartbreaking) Diagnosis

A rare, genetic, neurological disorder, INAD affects the axons, the part of a nerve cell that sends messages from the brain to other parts of the body. Over time, children with INAD lose the ability to control their heads, sit, crawl, walk, and communicate.

When Tamika received the news she battled both grief and anger. Understandably, she wrestles with the question of “why do children have to go through this” as she sees her son’s health regress.

Over time, Markel has lost his ability to communicate with noises and facial expressions. He last smiled at age five.

Markel’s Care: A Labor of Love

“People don’t know the emotional impact of taking care of my child. It’s a 24-hour thing,” Tamika laments.

Tamika has chosen to manage Markel’s care herself, despite having access to nursing care. It gives her some peace of mind to be the one responsible for him. And she admits to having a bit of an independent streak.

Markel’s care is medically complex. He is fed through a G-tube in his stomach and requires oxygen treatments. Daily medications help prevent seizures. His feet must be elevated so they don’t get cold or blister. Head positioning is critical for his ability to breathe. He needs regular diaper changes. Adaptive chairs and a medical-grade bed provide postural support, although Markel often sleeps in Tamika’s bed.

Sleep comes in 2-3 hour increments. When Markel is up, she is up. “I sleep with one eye and one ear open all the time,” she shares. 

“When he’s in his bed I don’t care what’s going on, I can hear his breathing change or a cough. I wake up in an instant. Having him in the bed with me helps me sleep better and more soundly. “

When Tamika is not at home with her family she is working overnights at a big-box retailer, while sister Tamia looks after Markel. Thankfully, her employer understands that she can never take her caregiving hat off. She once had to rush home in the middle of ringing up a customer because Markel’s feeding tube had fallen out.

“Knowing his condition is fatal. That’s something I live with every day going to work.

We Are Family: Finding Happiness in the Hard

As one can imagine, transporting Markel safely for trips outside the home can be exhausting. It requires packing up his medical supplies and wheelchair. Sister Tamia insists on being the one to carry him out to the car.

Tamika says her other children never complain about Markel’s around-the-clock needs and their impact on their day-to-day lives. “They love him to death,” she says with a smile.

Tamika is a homebody by nature. Her happy place is a dance party with her family anywhere around the house. Sometimes she holds Markel, but Tamika always sings loudly. When Markel was able to move he used to slap his hands to rap music so, she plays that for him, along with R&B.

“As long as Markel is good, I’m always happy,” she says.