Jody Kittle’s 4-month-old son Jensen, suffers from a life threatening syndrome called Severe Combined Immunodeficiency or SCID. Our affiliate WRGB reports.
“It’s a DNA disorder where he was basically born with no immune system,” Kittle said.
While baby Jensen appears healthy, he lacks the infection ighting cells to battle any kind of illness.
“Without an immune system he has no ability to fight against the flu, the common cold, even wearing the wrong fragrance can cause an allergic reaction. Any of those things can kill that little baby,” Kittle said.
Jensen was referred to Boston Children's Hospital for treatment. Doctors there told the family a bone marrow transplant could save baby Jensen's life, and the family fell on incredible luck. They learned Jensen's 2-year-old sister is a perfect match for a donor.
“She said don’t bother playing the lottery. She says you are extremely lucky because we found it so early with him, because it is a familial match, and it is an exact match,” Kittle said.
But now, the family is facing another roadblock in their fight to save baby Jensen. They say their insurance company denied them coverage for Jensen's procedure because Boston Children's Hospital is out of network.
They don't want to switch hospitals, and they're afraid if they're forced to, the extra time will cost them their son's life. His parents say we was scheduled to have the procedure on Sunday.
“Who knows how long he's got, I mean it's mind boggling to me, something can happen today so he's not here a week from now, time is of the essence,” Kittle said.
Jensen's parents have filed a complaint against their insurance company with the New York State Department of Health, for denying them coverage.
A spokesperson for DOH responded to our request for comment saying:
"The department has received the complaint and is performing an expedited review regarding the services requested."
We've also reached out to the family's insurance company. They receive Medicaid through Fidelis Care.
A representative for Fidelis said he is working on providing us a statement, but said he can't comment on individual cases because of HIPPA laws.
Right now, Jensen is undergoing blood transfusions every few weeks to help his body fight off infection while he waits for his procedure.