EsméBlore-Rimmer was 17 years of age, she had attended the Reading Festival and had been camping with friends theyhad  seen some of her favourite bandsplay over the August 2013 Bank Holiday weekend. She was previously fit and well with no significant past medicalhistory.  Contrary to hurtful speculationshe had not taken illicit drugs at the festival.  Esmé simply became unwell with a bout ofvomiting and returned home a day earlier than planned from the trip.  Esmé continued to vomit throughout the nightand was admitted to A & E the following day.  Her condition remained stable until shesuffered a sudden cardiac arrest early evening, sadly resuscitation was notsuccessful and she lost her fight to survive on Monday 26^th August2013. 

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 tomany.  She had grown into a confidentyoung woman who was very clear that her next educational step would be to studyFashion, 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 andlaugh.  Esmé is deeply missed by many ofthe hearts she touched.

Following aserious investigation into her sudden and unexplained death her family wereeventually notified on 23^rd December 2013 that Esmé had anundiagnosed inborn error of metabolism, a rare condition called MCADD.

Medium chain acyl dehydrogenasedeficiency (MCADD)

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

People withMCADD are born with a faulty or missing enzyme that the body normally uses tobreak down fatty acids.  The faulty ormissing enzyme is a result of genetic mutations a child inherits from theirparents and means that the body cannot break down stored fat to release energywhen needed.

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

Early inJanuary this year Esmé’s brother Dominic (aged 13)  was tested and found to have the samecondition, obviously this was another devastating blow for the family but theyhave been reassured that  providing thecondition is diagnosed and dietary recommendations are kept to this should be relatively straight forward to manage. Bittersweet informationfollowing the loss of Esmé. 

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

Raisingawareness of MCADD is something you can do, just by telling at least one personabout the condition.

Fund raisingfor the charity Metabolic Support UK isgreatly appreciated by both family and friends. They provide specific information, advice and support to families andfund educational and primary research programmes to investigate treatments andmedical services. 

A  Galaxy Tribute Fund Metabolic Support UK  has been created in Esmé’s memory for thispurpose. 

Their ethosis inspired by Eskimo legend:

Perhaps they are not the stars.

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

And shines down upon us to let us knowthey are happy.

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