Family Of 5-Month-Old With Rare Disease Needs West Michigan’s Help

Posted at 7:34 PM, Jul 19, 2013
and last updated 2013-07-19 19:34:58-04

GRAND RAPIDS, Mich. – It’s something no parent is prepared for.  The Higgins family is waiting for a transplant that could save their 5-month-old baby’s life.

A hole in her diaphragm has led to the loss of 90% of her intestines.  As medical bills continue to mount, her family is hoping a trip to Nebraska will be the answer they are looking for.

Jen and James Higgins are first time parents who said their daughter, Sophia, was a picture of perfect health.

“Slept all the time, she was happy.  She didn’t cry, wasn’t fussy,” said James.  “The easiest baby ever so we were thinking like maybe God was giving us a little break because he knew what was coming later.”

Two months ago Sophia’s life took a drastic turn.

“She had a hole in her diaphragm and what happened is her intestines were pulled into the diaphragm and they twisted in the stomach and died real fast,” her father said.

While most children have more than 100 centimeters of intestines, Sophia now has only 8 centimeters.  Her father said she has what is known as ‘small gut’ and must be fed by nutrition injections called TPN.

The injections are vital to her survival but her father said they take a toll, “It’s a poison kind of for baby’s liver.  Right now she is holding up pretty well, which is awesome.”

The hope now is for a transplant.  The Family has chosen a hospital in Nebraska due to its success rate.  They can’t get there alone, James said the family has $500,000 in medical bills.

“It doesn’t matter,” he said about the mounting debt, “she matters.”

The family is holding a benefit spaghetti dinner at Caledonia High School on Saturday July 27th from 5:00pm until 8:00pm.

Plates will be $10.00 and additional donations will be excepted.

More information can be found at the family’s benefit page.