Family pushing for SCID screening

June 8, 2011

Family pushing for SCID screening

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 .

linkback url: http://www.myfoxorlando.com/dpp/health/060311-family-pushing-for-scid-screening

Leave a Comment » | Newborn Screening, Personal stories in the news, SCID Initiative | Permalink
Posted by scidstuff

What is SCID?

Severe combined immunodeficiency disease is the most serious primary immunodeficiency disorder. The defining characteristic of SCID is the absence of T cells and, as a result, lack of B cell function as well. Unless these defects are corrected the child will die of opportunistic infections before their first or second birthday. SCID can be caused by several different genetic defects, most of which are hereditary. In the past, children with this disorder were kept in strict isolation, sometimes in a plastic isolator or "bubble". Bubbles are no longer used as a standard of care, but the name remains a part of the history of SCID.

Thanks for Stopping By:

Disclaimer: News articles come and go on the internet. When you find an interesting article and link to it, the link is dead in six months and the article is gone. I've copied many news articles here. I've included the information on the writer and linked back to the original publication. My intent is never to take anyone else's work as my own. My intent is to keep a repository of all the articles I find to be interesting. Many of these articles bring hope and encouragement to a family with a SCID child. Families with this disease are so rare, and they need to see that they are not alone in this struggle to keep their child alive. I hope this page is helpful to anyone with a family member or friend with any form of SCID.

SCID Stuff