Community rallies to fund new defibrillator for Whitchurch boy, 10
A generous community in Shropshire has been raising funds for a 10-year-old boy with a rare heart disease.
When Erin San-Antonio Powell was taken to hospital last year after suffering chest pain at school, the doctors could not find anything wrong with his heart.
A year later, Erin had another palpitation and was referred to the cardiology unit, and what they found was life-changing for Erin and his mother, Michelle Powell.
That is the devastating reality of Hypertrophic Obstructive Cardiomyopathy (HOCM), a disease which affects the muscle wall of the heart, that Erin was diagnosed with in the summer, meaning he now has to carry around a defibrillator with him at all times.
The youngster, from Whitchurch, was chosen by local business Alderford as the recipient of their fundraising efforts this festive season, after they found out about his condition.
Erin's mother, Michelle, said the family were very grateful for Alderford's help fundraising for a new and improved defibrillator after the whirlwind year Erin has suffered since being diagnosed.
"It all came as a bit of a shock really. He is 10-years-old but is just over 6ft tall," said Michelle.
"After the first scan last year, they said there was nothing wrong with his heart – they probably thought because of his height it must be down to his hormones.
"Then everything changed when Erin went to hospital the second time. The doctor did another scan and I could see the fear in his face as he looked at the scan.
"I went to pieces when the doctor told us it was HOCM. It had presented itself within a year since the last scan."
Michelle said that after the diagnosis life was difficult, as Erin, who has learning difficulties, suffered bouts of anxiety over his fear of not waking up if he went to sleep.
She said: "In 95 per cent of cases, nobody knows they have got it. It is horrible, it is like being diagnosed with a terminal illness. You cannot cure it, so you manage it.
"It is too risky for him to have a defibrillator in his chest because of his age, we need to wait until he is older. So he carries a portable one round with him all the time, which we had to fund ourselves.
"Erin has only just gone back to school after his visit to hospital in the summer. All the staff at his school have been CPR trained and a defibrillator has been fitted.
"He can't do the things he used to do. He even has to use a wheelchair sometimes because he gets out of breath quickly."
The disease can lead to cognitive heart failure and Michelle said that in the past, she has slept in Erin's bed at night because she is too scared to leave him alone.
Alderford has been helping the family raise £2,000 for a new defibrillator by installing a model sleigh in their grounds with a donation bucket for Erin's campaign.
