The COVID-19 pandemic has been difficult for everyone; we’ve all had to make changes to our lives because of it. Some of us have had to make bigger changes than others, and five-year-old Amelia Scholz is one of these people. She lives with ataxia-telangiectasia and has had to isolate since the beginning of the pandemic because of it.

About Ataxia-Telangiectasia

Ataxia-telangiectasia (AT) is a rare condition that impacts many systems throughout the body, especially the nervous and immune system. It is characterized by ataxia, which is progressive and typically begins before age five. Other symptoms include difficulty walking, slurred speech, issues with balance, a weakened immune system, chronic infections, involuntary movements, stooped posture, gray hair and wrinkled skin in adolescence, and disturbances in nerve functions, among others. All of these effects occur due to a mutated ATM gene, which is inherited in an autosomal recessive pattern. This gene is responsible for a protein needed in cell division, DNA repair, and the development of numerous body systems. When it is mutated, cells become unstable and die off, resulting in the characteristic symptoms of AT. Treatment is symptomatic, and doctors may suggest antibiotics, gamma-globulin injections, postural drainage, vitamins, and physical, occupational, and speech therapy.

Amelia’s Story

Because of the high risk of infection and weakened immune system caused by AT, Amelia has remained in her home since March. She and her family are very careful when it comes to the pandemic, as the virus would be detrimental to her health.

This isolation has brought loneliness with it; Amelia cannot see her friends, play outside, or go to school. Despite the challenges the pandemic has presented her with, she has remained brave and positive. Fortunately, her family and community worked to surprise her around Christmas to boost her morale.

She was woken up from an afternoon-nap by the sound of sirens, family honking, and Santa Claus, as they had all gathered outside of her home to wish her a Merry Christmas. Her family stated that the visit brought “Christmas spirit and magic” to Amelia.

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