Waco: Local couple loses infant son to rare disorder

Former Reicher High School coach Alex Braig and his wife Cayley say they have “no words to describe how devastated we are,” after losing their infant son, Jack, to a rare genetic disorder. (Family photo)
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WACO, Texas (KWTX) Former Reicher High School coach Alex Braig and his wife Cayley have come home without their infant son, Jackson “Jack” Edward Braig, who spent all five months of his life in hospitals after doctors discovered he had a rare genetic disorder, Diamond-Blackfan anemia, in which the bone marrow fails to produce enough red blood cells to carry oxygen to the body’s tissues.

Jack died on Oct. 7 at Texas Children’s Hospital in Houston.

“He was our only son,” Alex said Wednesday.

“We lost our son and we have absolutely no words to describe how devastated we are."

Now the couple is preparing for a funeral.

Visitation is from 5:30 p.m. to 7:30 p.m. Friday at Lake Shore Funeral Home at 5201 Steinbeck Bend Dr. in Waco.

The service is at 1 p.m. Saturday at Renew Church at 6509 Bosque Blvd.

Burial follows at Oakwood Cemetery.

Jack was born to the lifelong Waco residents on May 9 at Baylor Scott & White Hillcrest Medical Center in Waco, but was transferred to the Neonatal Intensive Care unit at Scott & White Medical Center in Temple after doctors determined he had Pierre-Robin sequence, which left him with a cleft palate and breathing difficulties.

He also had congenital heart abnormalities, which led to his transfer to Texas Children’s Hospital to which he was flown by jet.

Doctors performed open heart surgery to repair the abnormalities when he was just 4 weeks old and then was diagnosed with pulmonary vein stenosis.

Then doctor’s discovered the underlying genetic disorder, which had caused the other problems.

Cayley was on summer break from nursing school, but Alex, who now works for local insurance adjuster after 12 years as an assistant football coach and head soccer coach at Reicher, had to take unpaid leave from work to be there with his wife and son.

The couple hoped to bring Jack home, but the infant’s heart gave out early in the morning on Oct. 7 and doctors were unable to revive him.

Now the couple is faced not only with the grief of the loss of their child, but also the weight of the expenses of Jack’s medical care and Alex’s absence from work.

"We are truly grateful for the love and support we have already received from so many,” they said.

A GoFundMe account has been established for the couple.