Meet Yalina: 2020 Family Advocacy Week Champion

Yalina is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Yalina and her family will share information about her health journey, Ann and Robert H. Lurie Children’s Hospital of Chicago’s role in providing Yalina with necessary health care services, and why the public and our elected officials must invest in the future of kids like Yalina.

By 6 months old, Yalina was not meeting developmental milestones, such as sitting up or holding up her head. However, Yalina’s mother, Wanika, thought she might just be developing slower and would eventually reach these milestones. Yet when Yalina turned 1 and wasn’t walking, her mother suspected something was not right.

Wanika brought her daughter to Ann and Robert H. Lurie Children’s Hospital in Chicago where she was diagnosed with muscular dystrophy.

After the diagnosis, Yalina’s family was devastated but quickly learned as much as possible about their new reality. It was recommended that she see a neurologist, physical and occupational therapists, and she responded well to these therapies.

As Yalina grew up, it was apparent that her condition was limited to her physical development, not neurological. For additional support, Muscular Dystrophy Association helped secure medical equipment for Yalina as her needs changed.

When Yalina was 12, doctors conducted LMNA genetic testing and discovered a rare genetic mutation causing Emery-Dreifuss muscular dystrophy. This mutation affects one person in 500,000 and most commonly men.

Then, in 2018, a spinal fusion helped connect vertebrae in Yalina’s spine and treat her scoliosis, which is a common diagnosis for adolescents with MD.

Today Yalina is keeping busy and leading a full life. Last summer she interned at Lincoln Park Zoo and participated in a program at Shedd Aquarium in Chicago. She’s an exceptional student and excels in her online classes at Harvard, proving she is capable of anything despite her physical limitations.


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