"As a parent you do not expect to lose your child and life will never be the same again," : mother of school boy Elliot Peters looks back as anniversary approaches
PUBLISHED: 10:54 07 February 2019 | UPDATED: 10:54 07 February 2019
The mother of Dunmow school boy Elliot Peters has spoken about life without her son, almost a year after his death.
As part of her mission to raise awareness in hospitals about the genetic disorder which caused Elliot’s death, Holly Storey met with a Government minister from the Department of Health and Social Care last month.
The Helena Romanes School pupil and keen Arsenal fan was rushed to Great Ormond Street Hospital (GOSH), where he was diagnosed with ornithine transcarbamylase (OTC) deficiency. However, the diagnosis came too late and Elliot died on March 9, aged just 14.
Those with OTC deficiency lack or have a deficiency of the enzyme ornithine transcarbamylase, which prevents ammonia from being converted into urea. This leads to a build up of ammonia in the body and, can lead to seizures and comas, if left untreated.
Alongside Saffron Walden MP, Kemi Badenoch, Mrs Storey met Government minister Stephen Hammond MP on January 22.
Mrs Storey said: “Almost a year on since Elliot passed away, life is very different. As a parent you do not expect to lose your child and life will never be the same again. We all miss his funny and caring personality.
“If Elliot was still here today he would be planning for his GCSEs and probably thinking about doing an apprenticeship, but he had never said what in. He would also be talking about the school prom and what suit he would be wearing. Something he would also be keen to do is see his cousin Chantelle’s baby in Florida, who he didn’t know was due.”
Mrs Storey, her husband, Andy, and Elliot’s sister, Bryony Peters, now want to see hospitals across the country check patients’ ammonia levels when they present with the same symptoms that Elliot had. They hope this will prevent more deaths being caused by OTC deficiency.
Explaining her mission, Mrs Storey said: “We want to make other families safe and to prevent anyone else losing a family member. Due to Elliot’s age, OTC deficiency was not something GOSH were looking for as, normally, a newborn presents with symptoms. But we have since found other families who have lost people, who presented their first symptoms at the ages of seven, 28 and also 59.
“Mr Hammond and Mrs Badenoch listened and showed so much compassion. He will be in contact with the NHS to discuss if changes can be made within hospitals, so that ammonia levels are checked when someone presents with the symptoms that Elliot did.”
Lindsay Weaver, chief executive of Metabolic Support UK, a charity for people suffering from inherited metabolic disorders, spoke to the Broadcast about hyperammonaemia, a term for an excess amount of ammonia in the blood, from which Elliot suffered.
Miss Weaver explained that increasing the chances of detecting hyperammonaemia in the “essential time frame” could avoid devastating effects.
Miss Weaver said: “Prompt plasma ammonia testing following the proper procedures is critical but remains a challenge.
“If ammonia can be measured in the labs of any hospital that has an emergency department, labour ward or neonatal unit, and proper procedures are followed this would also increase the chances of detection. Therefore ensuring frontline staff can more easily carry out the test would help the likelihood of them testing for it.”
Miss Weaver also attended the meeting with Mrs Storey and Mrs Badenoch.
Since Elliot’s death, more than £15,000 has been raised for GOSH in his memory, following a fun day and donations from members of the community.
Thousands of red and white ribbons, the colours of Elliot’s favourite football team, were also exchanged for donations. Plans for Mrs Storey to meet a Government minister emerged after Mrs Badenoch asked Prime Minister Theresa May if she would meet with Elliot’s family.