Rare bone disorder can’t beat 11-year-old

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A WALK TO raise funds to cover medical expenses for Mya Holden, who has TAR Syndrome, is planned Aug. 25 in Highland, IN.

Born with a rare bone disorder called “TAR Syndrome,” 11-year-old Mya Holden is a fighter. Fiercely independent despite her physical challenges, Mya does as much as she can for herself, yet requires assistance from family and friends on a regular basis.

She is missing the radius bone in both forearms, making her arms shorter than most people’s. There are daily living tasks that she is unable to perform such as combing her hair, tying shoes, and bathing herself.

Every summer her family hosts “A Heart for TAR,” an awareness walk, in her honor. Funds raised from the walk help cover expenses for custom clothing, special technology/software to assist her in school, and medical costs. Mya travels bi-weekly to Indianapolis to Riley Children’s Hospital for doctor visits.

Family members say Mya is a strong little girl. “She is a happy, outgoing pre-teen looking forward to life. She doesn’t let her condition get her down even though some days, and some of her treatments and therapies are painful.”

The benefit walk both raises awareness of the rare bone disorder, TAR Syndrome, and provides funds to acquire modified items to aid Mya’s independence.

This year’s awareness walk to benefit Mya is Saturday, August 25 at Wicker Park in Highland, IN. The walk begins at 8 a.m. The registration fee is $25 per person or $20 for a group of five or more. Donations are welcomed; ten per cent of all donations will be donated to the orthopaedic department at Riley Children’s Hospital to assist another “TAR” family.

To hear more of Mya’s story visit dumas.monica@yahoo.com.

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