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Finley our beautiful little boy and brother to Isabelle was born on 9th May 2013 and fell asleep on 28th May 2013 aged 19 days old.

We had no warning that Finley was going to be born sick and after only being 15 hrs old we were told Finley needed to be transferred to Great Ormond Street Hospital. 

Finley was born with a very rare Metabolic Disease for which we received a diagnosis for in December 2015. Finleys metabolic condition was causing his heart wall to thicken at an alarming rate, this caused the heart to go into heart failure as the heart was unable to pump enough blood around his body to sustain life as we know it. 

Finley died peacefully in our arms on 28th May 2013. 

GOSH are a fantastic hospital and they fought in vain to try and keep Finley alive, but some metabolic diseases are so rare that there is no treatment available even in 2013. 

Finley was diagnosed with a mitochondrial disease called VARS2 in December 2015.  We were very lucky to be able to have a name put towards Finleys disorder otherwise we would still be wondering today. This diagnosis will go on and help others receive a diagnose in the future.

All / any money raised will be going straight to GOSH to fund the following project:

We are currently raising £5,000 towards research into developing new treatments for Non-Ketotic Hyperglycinemia (NKH). NKH is a rare metabolic disease that becomes apparent in babies soon after birth with lethargy, breathing difficulties and neurological problems including epilepsy. If we raise more than we hope the additional funds will be used to support the aims of the charity and help contribute to other essential projects, allowing Great Ormond Street Hospital to provide inspirational and world-class care to hundreds of children every day. If we are not able to reach the entire target the remainder of funds required will be met by the charity.

THANK YOU.  Clare, Jed & Isabelle XXX.

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