WTSP.com, Tampa Bay’s News Leader in Florida recently reported on the story of Kye Johnson, a baby diagnosed with Severe Combined Immune Deficiency (SCID). He has been living in the hospital for the past 9 months. Unfortunately, Little Kye was not lucky enough to be diagnosed with SCID until after his body had already been devastated by pneumonia, bronchitis, and other serious infections. If he had been diagnosed with SCID Newborn Screening and treated earlier, Kye’s story could be completely different.
As the article quoted Dr. Sleasman of All Children’s Hospital, “If we intervene early and treat, everybody goes home happily ever after.”
Last year, Governor Rick Scott line item vetoed funding for SCID screening in the state’s budget. Advocates in the state are hopeful that bringing attention to stories like Kye’s will illustrate to Governor Scott the importance of adding newborn screening for SCID to Florida’s newborn screening panel.
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Alethea Arthur and Heather Smith, both mothers of children born with Severe Combined Immune Deficiency (SCID), are continuing their fight to see newborn screening for SCID become a reality in their home state of Florida. They are hoping that Governor Rick Scott will pass an item in the budget that will provide for the funding of this lifesaving test and save dozens of babies in Florida from the heartbreak and pain that late diagnosis of SCID in their children has caused these women. Governor Scott vetoed a similar measure last year, but advocates are hopeful that with increased awareness and education SCID newborn screening will finally come to Florida. Please listen to the interview conducted by Sascha Cordner of WFSU on March 23, 2012.
To learn more about the IDF SCID Newborn Screening Campaign, check out the website! http://primaryimmune.org/patients-and-families/idf-scid-initiative/idf-scid-newborn-screening-campaign