Just one year ago, Tara’s oldest son, Luca, started coming home from school crying in pain. He would rush to take off his shoes and socks, saying that his feet were “buzzing”. At five years old, Luca’s foot had high arches and a deformity, causing his bones to protrude, bruises to appear, and blisters to form. Luca also experienced delays in his developmental milestones; he was a late walker, had trouble with his balance, and tripped a lot.
After a thorough examination by multiple clinicians and specialists, including an orthopedist and a pediatric neurologist, genetic testing was ordered, and it confirmed a diagnosis of Charcot-Marie-Tooth (CMT).
Luca’s mom, Tara, saw that her other two children, Liam and Lane, experienced developmental delays similar to Luca’s. Knowing that CMT could be genetically inherited, the two brothers were genetically tested and were both confirmed with CMT. All three of Tara’s children were diagnosed with this rare disorder.
Within the course of a year, Tara’s entire world changed. Her calendar became filled with occupational therapy, physical therapy, and speech therapy appointments for all three of her children. Luca has been fitted for custom ankle braces and orthotics to help him continue to walk. He was prescribed nerve medication at the age of 5. And he now has a 504 education plan (a set of accommodations, or changes in the classroom environment, to help children follow the regular curriculum).
And yet, as a mother, Tara still finds the strength to fight for her sons and their future. After receiving Luca’s diagnosis, Tara dove into the world of CMT research and advocacy and has not stopped since. She is an active CMTRF Ambassador and has started a personal blog as a reference for other families going through similar journeys. You can watch a recorded interview with her here.
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You can help develop a treatment for CMT, for children like Luca, Liam, and Lane. Currently, all donations are being doubled up to $250,000, which means you can make twice the impact with a gift today. With your support, we can help Tara end the legacy of CMT.
