Test for Severe Combined Immunodeficiency Disorder (SCID) as part of newborn screening.

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Severe Combined Immunodeficiency Disorder (SCID) is a Severe, rare and until recently fatal autoimmune condition which some may know as bubble boy syndrome (as children diagnosed are unable to leave a special filtered air room).There are several types of SCID, which is a genetic condition however in short it means that the babies who have the condition have no immune system and are unable to fight viruses, bacterias and other illnesses like a healthy baby. There are only two centres in the U.K. that are able to treat SCID and these are Great Ormond Street and Newcastle Children's Hospital. The only cure for SCID currently is a bone marrow transplant; although a child with SCID does have to go through other treatments alongside this none of which are cures. The earlier this condition is detected the greater chance that the baby will make a full recovery. If made as part of the newborn screening parents would find out there child had SCID very early on. Whereas currently a child usually gets severely ill with an infection before being diagnosed. Some infections are fatal to children before SCID ever gets diagnosed. As some of you may be aware this is something very close to my heart as my little girl Arriella has recently at four months old been diagnosed with SCID. This was only detected after she had become extremely unwell with four respiratory viruses, pneumonia, sepsis, thrush on her windpipe and the very rare bacterial infection HIB. Arriella had also been in hospital for a month before her diagnosis and we were transferred last week to Great Ormond Street where she is receiving outstanding care for her infections and is currently awaiting a bone marrow transplant. Had she been screened as part of newborn screening Arriella probably would have had her transplant by now and would not have had to take unwell to get diagnosed. 

Please help me to raise awareness and help families and children get earlier diagnosis and faster treatment.

Thankyou.

You can also follow both mine and Arriellas journey via Facebook.

 

 



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