Tara, Luca, Liam and Lane, Louisiana, Living With CMT

When Luca Haik was just four years old, his mother, Tara, sensed something wasn’t right.

“Luca came home from school every day crying in pain, rushing to take off his socks and shoes saying that his feet ‘felt weird,’” said Tara. “He was also experiencing delays in his developmental milestones and was constantly falling.”

Tara took him to their family pediatrician, who referred them to an orthopedic specialist, and eventually to a pediatric neurologist. After months of appointments with various doctors and specialists and a series of genetic tests, Tara finally received an answer: Luca was diagnosed with Charcot-Marie-Tooth disease type 2N.

It was at that moment that everything changed for their family.

“When I got the phone call with his diagnosis I was pretty much in shock and crying because we didn’t know much about it.”

Within a single year, the Haik family received life-changing news: Luca (now 8) was diagnosed with CMT — followed by diagnoses for both of his younger brothers, Liam (now 5) and Lane (now 3), as well as Tara and her mother.

“If it wasn’t for Luca, we wouldn’t have any answers. Luca was the lifesaver. We have had several family members with CMT but didn’t even know it was CMT that they had.”

Tara’s calendar is now packed with occupational, speech and physical therapy appointments for all three of her boys. The daily demands of CMT have forced her to make significant changes in her professional life, Shifting to PRN status after realizing that full-time work was no longer sustainable.

The daily struggle with CMT isn’t just physical. Tara’s boys, especially Luca, experience chronic pain every day. Luca also struggles with fine motor skills and experiences mental hardships. Additionally, Luca’s emotional well-being has been affected, especially when it comes to social interactions.

“Luca’s really been struggling — not just physically, but emotionally too. The interactions at school and with friends have been hard, and he’s become very distant. He’s even started seeing a psychologist. He tries so hard to play sports, but sometimes his body just won’t let him. I think deep down he knows he struggles more than other kids — but he’s not a quitter. He gives it everything he’s got, every single day.”

Luca’s determination is unwavering. Tara describes him as a child full of strength, giving his all every single day.

Luca is also fully dependent on his braces. They help with his balance, his ability to walk and with everyday tasks. He also experiences pain such as buzzing, tingling and numbness below his knees.

“My biggest fear is that Luca’s diagnosis will get progressively worse and there will be no help for him.”

Tara’s parents have been an essential part of her support system.

“I don’t know what I’d do without them. It’s a struggle even with support — just to find resources and funding. We struggle trying to afford the braces and Luca doesn’t even qualify for disability.”

When Luca was diagnosed, Tara immediately searched for support and answers.

“The first thing I did was find CMT Research Foundation. If it wasn’t for them, I really don’t know where we would be today.”

Tara’s advice to other moms who are navigating CMT is to find every resource you can and open every door that you have — use your voice and help raise awareness.

“The more awareness we raise, the more people will understand. I think a lot of people just don’t know about it.”

Through it all, Tara holds on to hope.

“Because of the work of CMTRF, I’m confident there will be treatment and cures for my children and all others with CMT.”

Tara’s face radiates with light as she describes her three boys.

“Luca — he’s the one who started this entire journey for us. He’s our savior, as I like to say. Liam is very energetic and knows how to put a smile on our faces with his outgoing personality. Lane — he’s my sweet, fun, bubbly baby.”

Tara doesn’t wish for flowers or breakfast in bed this Mother’s Day. No, she wishes for a cure for CMT and to take away her boys’ pain.

“I’m hopeful that Luca, Liam and Lane can all be free of pain and that there is some way to make it easier for them to cope throughout the day.”

Tara carries a daily reminder of her hope — a meaningful tattoo.

“A year ago, I decided to get a microscope tattoo on my arm in honor of Luca, Liam and Lane — to hopefully find a cure. Because this represents all the science we have. It’s the most meaningful tattoo I have.”

This Mother’s Day, please consider donating on behalf of Tara, Luca, Liam and Lane — so they can one day live free from this disease. Every gift brings us closer to a cure. Donate today at cmtrf.org/donate.