ORLANDO, Fla. (WOFL FOX 35) – A family continues to grieve over the loss of a newborn child who fell victim to a rare, but treatable, disease. They are also taking on a cause which they hope will help save the lives of others.
Kyle Harden, who is still devastated by the deathof his daughter Annabelle, says he has yet to wash her clothes because the smell brings comfort and motivation. Little Annabelle died of Severe Combined Immunodeficiency Disease (SCID), also known as the “bubble boy” disease.
It’s a disease that could have been treated with a bone marrow transplant had their baby simply been screened.
“Her little body wasn’t able to fight anything off,” says Annabelle’s mother, Audrey. “Any disease or germ she came into contact with could do its thing.”
Born seemingly healthy in September of last year, Annabelle began to experience lots of vomiting and reflux beginning four months later. In February of this year, doctors diagnosed with her SCID. She then died six days later of pneumonia and heart failure. Her immune system was useless.
“I was like, ‘Why my baby? Why? Why us? I don’t understand,'” Audrey says.
Now this family is on a mission, along with other families who have lost children. SCID is one of the most treatable of all conditions when screened detected; however, Governor Rick Scott has vetoed the SCID testing newborn screening program, despite the recommendation from the state’s Newborn Screening Advisory Committee that SCID be added to the newborn screening panel.
“I don’t have a daughter, simply because she wasn’t screened for SCID,” says Kyle. “It might be easy to say one in 35,000 isn’t a lot. Until it happens to you, you don’t realize how helpless you really are.”
The Hardens are encouraging others to write the governor to protest his decision. They also have a goal to have Newborn Screening for SCID passed in ALL 50 states. For more information, click on www.SCIDangelsforlife.com .