Esmé Blore-Rimmer was 17 years of age, she  had attended the Reading Festival and had been camping with friends they had  seen some of her favourite bands play over the August 2013 Bank Holiday weekend.  She was previously fit and well with no significant past medical history.  Contrary to hurtful speculation she had not taken illicit drugs at the festival.  Esmé simply became unwell with a bout of vomiting and returned home a day earlier than planned from the trip.  Esmé continued to vomit throughout the night and was admitted to A & E the following day.  Her condition remained stable until she suffered a sudden cardiac arrest early evening, sadly resuscitation was not successful and she lost her fight to survive on Monday 26^th August 2013. 

Esmé was a beautiful, vibrant, and spirited girl; she had a true zest for enjoying life to the full. She had a cracking sense of humour and a very kind spirit that bought joy to many.  She had grown into a confident young woman who was very clear that her next educational step would be to study Fashion, Communication and Styling preferably at Middlesex University.   Esmé was never afraid to voice her opinion, she had a strong work ethic and she graced us all with her infectious smile and laugh.  Esmé is deeply missed by many of the hearts she touched.

Following a serious investigation into her sudden and unexplained death her family were eventually notified on 23^rd December 2013 that Esmé had an undiagnosed inborn error of metabolism, a rare condition called MCADD.

Medium chain acyl dehydrogenase deficiency (MCADD)

Medium-chain acyl-CoA dehydrogenase deficiency (MCADD) is a rare genetic condition in which a person has problems breaking down fatty acids for energy. It is estimated that 1 in every 10,000 babies are born with the condition.

People with MCADD are born with a faulty or missing enzyme that the body normally uses to break down fatty acids.  The faulty or missing enzyme is a result of genetic mutations a child inherits from their parents and means that the body cannot break down stored fat to release energy when needed.

If the body needs to break down fats quickly (for example if a person hasn’t eaten for a while) the build-up of medium-chain fats can become toxic (poisonous) and lead to serious and life threatening symptoms.

Early in January this year Esmé’s brother Dominic (aged 13)  was tested and found to have the same condition, obviously this was another devastating blow for the family but they have been reassured that  providing the condition is diagnosed and dietary recommendations are kept to this should be relatively straight forward to manage. Bittersweet information following the loss of Esmé. 

Since 2009 new born screening in the UK has been introduced with the Guthrie test.

Raising awareness of MCADD is something you can do, just by telling at least one person about the condition.

Fund raising for the charity Climb (Children Living with Inherited Metabolic Diseases) is greatly appreciated by both family and friends.  Climb provide specific information, advice and support to families and fund educational and primary research programmes to investigate treatments and medical services. 

A  Galaxy Tribute Fund (proceeds to Climb)  has been created in Esmé’s memory for this purpose. 

Their ethos is inspired by Eskimo legend:

Perhaps they are not the stars.

But rather openings in the heavens where the love of our lost ones pours through

And shines down upon us to let us know they are happy.

Thank you for your support. To donate please visit: https://www.justgiving.com/Esme-Blore-Rimmer