Demanding Action Of Congress to Pass a Bill Mandating Newborn Testing For (SCID)

I have just sent this to our districts congressional representative....

Dear Honorable Representative, I am writing to request that a bill is written and brought before congress to instate a mandatory testing in newborn infants for the SCID (Severe Combined Immunodefficiency Disorder)

On January 21, 2010, the Advisory Committee on Heritable Disorders in Newborns and Children voted unanimously to add screening for Severe Combined Immune Deficiency or SCID – commonly known as bubble boy disease – to the core panel for universal screening of all newborns in the United States. (SCID homepage)

Many children go undiagnosed until months into their life, usually after contracting a common virus that is most likely to be life threatening. A bone marrow transplant is required and can cure the disease if caught early enough (before 3 months of age). The chances of the bone marrow transplant's success is decreased drastically after 3 month of age. Especially if the infant contracts an illness before the disorder is diagnosed. Many vaccines such as the live Rotavirus can prove detrimental if the infant has SCID that has not been detected. (the Rotavirrus Vaccine is recommended/required in every child's vaccination schedule)

SCID is considered a more rare disorder, however according to Dr. Rebecca Buckley, of Duke’s division of Pediatric Allergy and Immunology, many cases go undetected because infants who have died due to a viral infection are not tested for SCID in autopsy. So the true numbers of those infected with SCID is not known.

This is a cause near to my heart. Currently my 8 month old nephew is struggling with his life after a battle with 3 different viruses (including H1N1). Recent tests confirmed that he is a carrier is SCID. if detected earlier millions in medical bills and heartache for his parents could have been avoided. Before this Deklan was a healthy strong baby with no signs of any illness.

Many Media outlets have been following Deklan's story and the support is overwhelming. We would like to use his circumstance to create awareness and prevent any and all families from having to go through a very easily preventable and curable matter.

I assure you that we have many registered voters in the state of North Carolina that support this cause, along with the attention of local media. I Kandace Hodges Galvanek, as an active, voting and tax paying citizen, hereby demand action by the powers that be, to whom we have put our trust in and voted in to office.

You can follow the family's and Deklan's Story on the Facebook page Bring Deklan Home, as well as in various news articles. http://www.fox19.com/story/24817172/sick-cary-child-with-tests-positive-for-scid We thank you in advance for your immediate attention to this matter.

i look forward to hearing the progress of this bill.

Sincerely, Kandace Hodges-Galvanek