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From: Greymouth

My Story

Luka Sutherland

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


Luka's story

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 .