A father has told of his heartbreaking anguish after his ‘healthy’ 11-year-old daughter died suddenly in her sleep.
Steve Pritchard, 43, said his daughter, Matilda, had gone to bed ‘normally’ on the night of April 2 this year, showing no sign she was unwell.
But on the following morning Mr Pritchard and his wife, Anna, 43, discovered Matilda had suffered a cardiac arrest in her sleep.
Despite the best efforts of paramedics who arrived on the scene within two minutes, she was pronounced dead on arrival at hospital.
Mr Pritchard, a company director, from Pudsey, Leeds, said it was later revealed that Matilda had an undiagnosed heart condition called arrhythmogenic right ventricular cardiomyopathy.
This is a genetic defect that causes the heart muscles to be weaker than normal and thus have to work harder to pump blood, which can result in a potentially deadly cardiac arrest.
The gene that causes arrhythmogenic right ventricular cardiomyopathy occurs in about one in 1,000 people, though not everyone who carries it will develop the condition.
Both Mr and Mrs Pritchard as well as Matilda’s older sister Olivia have now had several tests to find out if they also have the condition.
Matilda, 11, went to bed as normal on one April evening earlier this year, but she never woke up
Her parents who discovered Matilda unresponsive the next morning desperately called 999 for help but despite the best efforts of paramedics who rushed to the scene, she was unable to be revived
Her father Steve, mother Anna, and older sister Olivia later learned Matilda had an undiagnosed genetic heart condition that caused the organ to fail in her sleep
‘We were immediately worried about Olivia,’ Mr Pritchard said.
‘She’s 14, and symptoms usually start around 13. But everything’s come back completely clean – we’re all fine.’
People with arrhythmogenic right ventricular cardiomyopathy can experience symptoms such as heart palpitations, fainting, breathlessness, swelling as well as pain and discomfort in the chest.
However, it can sometimes show no symptoms at all, or the can only appear as a person ages, though it can still kill even if no signs are present.
The condition is usually diagnosed using scans to examine the size of the heart as well as tests to measure if it is beating in a normal rhythm.
There is no cure for arrhythmogenic right ventricular cardiomyopathy, also called arrhythmogenic cardiomyopathy, but treatments are available.
These are most commonly drugs that help support the heart, but other options include having a pacemaker installed, implants that monitor the heart and raise the alarm if a problem is detected or heart surgery.
Such treatments aim to reduce the symptoms helping people with the condition live normal lives as well reduce the chances of potentially dangerous complications.
Matilda’s said their daughter was a passionate environmentalist who loved animals and helping pick up litter in her local area
As part of honouring her memory Matilda’s family have set up an fundraiser for charity Keep Britain Tidy
An estimated 64,000 people in the UK are estimated to have a faulty gene which can lead to the condition.
Matilda’s family are now taking steps to honour Matilda’s ‘last wish’ — to ‘rid the world of litter.’
Mr Pritchard said: ‘It’s been catastrophically terrible — but I’m hoping we can start the process of our little girl’s dream, of a world without litter.’
Matilda who was ‘an animal lover’ and ‘passionate about the environment’ loved picking litter up at her local park.
In her memory Mr Pritchard has set up an online fundraiser for the charity Keep Britain Tidy aiming to fund an educational programme it runs for five years – one for each of the secondary school years Matilda had ahead.