Clinton child battles rare genetic disorder – Utica Observer Dispatch

Posted: May 22, 2017 at 7:50 am

Amy Neff Roth

Dominic Tebo has gotten a lot of love and a lot of medical care in his young life.

The Clinton 2-year old was born with an array of medical problems and has undergone many treatments. His parents put the other parts of their lives on hold for six months so they could stay in Syracuse while he remained in the neonatal intensive care unit.

Now Dominic needs one thing his parents cant afford to give him an accessible home.

My child has love. He has toys. He has everything that a 2-year-old needs, a normal two-year old. But unfortunately, I cannot give him the room to keep progressing, said Dominics mother, Monica Moffo.

So the Lake Delta Kiwanis are stepping in, hosting a fundraiser Sunday in Lee Center to raise money for the family. It will take place from noon to 5 p.m. at the Lee Center Fire Hall at 5510 School St. It will feature a chicken barbecue, live music and 50/50 and gift basket raffles. The cost is $10 per person.

Moffo and her fianc, Eric Tebo, Dominics father, lived in Lee Center before they temporarily stopped working to be with Dominic. Now they live in Clinton with Moffos mother.

Dominic has a rare gene mutation known as MAG-2. His doctor told the family that hes one of only five people in the world and the only one in the United States known to have the condition, Moffo said. Its rarity is apparent in the lack of information available through a Google search.

He has all his chromosomes and out of one of his chromosomes theres thousands of letters in a chromosome out of all of his chromosomes, hes missing one letter, Moffo explained.

Moffo said theyve been told that all the people with the mutation have respiratory problems like Dominic. But Dominic was born with a laundry list of medical conditions, many of which the others do not have, Moffo said.

Dominic was born with hypopituitarism (malfunctioning of the pituitary gland), tracheomalachia (in which the cartilage is so soft that the trachea partially collapses), clench hands, club feet, bell-shaped lungs and an enlarged tongue. He has a tracheotomy to help his breathing and had surgery on his tongue a year and a half ago. He used to be on a feeding tube, but hes able to eat on his own now.

Hes had multiple surgeries, some life threatening, and has been in and out of the hospital. Hes about to scooch around the house now and is learning to use a walker, his mother said. He also has a weakened immune system so his family tried to keep him somewhat isolated.

Its not clear if all his problems are linked to his genetic defect or if he has another medical condition as well.

They literally consider him an open book mystery, Moffo said.

Despite the challenges, Dominic has come a long way, she said.

Hes a very happy boy, she said, and always a smile, no matter what.

Follow @OD_Roth on Twitter or call her at 315-691-2961

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Clinton child battles rare genetic disorder - Utica Observer Dispatch

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