June 11th 2014 - meet Luka , 11 months old and critically ill in Starship hospital.Luka is our youngest SCID patient member.
A community fundraiser is in progress for Luka - to give please visit https://www.givealittle.co.nz/cause/LukasJourney
Aged 10 months old, Luka was diagnosed on the 23rd of May 2013 with Severe Combined Immunodeficiency Disorder (SCID). Luka's parents Cassie and Joshua are still coming to terms with this diagnosis and commencing a long journey towards Bone marrow transplant . To keep friends and family updated they have started a blog and are already passionate about sharing their experience and helping to raise awareness of a new screening test which could have identified Luka's SCID condition as a newborn, enabling Bone marrow transplant before he became critically ill . Luka's story can be followed on his blog http://cassiebrown06.blog.com/
Luka is currently in a critical condition in Starship hospital. Drs have told us it is a miracle that he has made it this far without getting critically ill sooner- he is a fighter!
Luka will eventually need to
undergo a bone marrow transplant to give him a new immune system and the
best chance of survival.
SCID 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 (the specialized white blood cells made in the bone
marrow to fight infection) so in simple terms Luka has NO T-cells which
mean's his immune system does not work at all. Luka is susceptible to
serious illness by bacteria, viruses and fungi that would not normally
cause illness in a person with a normal immune system
SCID is a very rare disease it is estimated to occur in approximately 1
out 50,000 to 100,000 births.
SCID NEWBORN TESTING
SCID can be detected from the simple heel prick test that is done when they are newborn which is happening in most
states in America and some other countries around the world but
unfortunately New Zealand does not screen for SCID so experts suspect
that many children with SCID die from infections before being diagnosed .