Art Estopinan and his wife Olga welcomed a baby boy into their world. Arturo, Jr. looked like any other sweet infant. He laughed, he cried, he grew. But it soon became apparent that something wasn’t right.

TK2

Art and Olga Estopinan with their son at the Baltimore Aquarium, compliments of the Make A Wish Foundation

After much trial and error, Art Jr. would be diagnosed with TK2 or mitochondrial DNA depletion syndrome, which causes progressive muscle weakness. Motor skills such as standing, walking, eating, talking, vision and breathing can be effected. Research at Columbia University MedicalCenter was the first glimmer of hope for the family.

 

The impact of this rare disease diagnosis has changed their lives. Olga stopped working to become a full time mom and caregiver to her son. The family sold their home to move closer to doctors at Johns Hopkins who, in coordination with Columbia in New York, provided medical care to Art Jr.

But the Estopinans found that they were not alone. Other cases of TK2 were being diagnosed and their family became connected with others around the world, looking for answers to an incurable childhood disease. 

If you’d like to support the Estopinan’s efforts to shed light on TK2, information on giving to Columbia Medical Center can be found here.

Art Estopinan on Love, Hope and TK2 on This Week’s Bump In The Road

 

 

 

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