Emsworth mum shares story of 22-year-old son's death due to pulmonary hypertension to help others recognise signs
A DEVASTATED mother who lost her son to a rare disease is raising awareness of the condition to help people recognise the signs before it is too late.
Will Acres from Emsworth died two years ago at the age of just 22 after having a heart and double lung transplant in a bid to save him from pulmonary hypertension (PH), which he was diagnosed with just 17 months before.
As a child, the former St James Primary School pupil was diagnosed with asthma but was sent to specialists by his GP after he turned 20, and found it difficult to walk without getting breathless and had chest pains.
Further tests revealed Will, who graduated from London’s British Institute of Modern Music with a degree in music production in 2017, had pulmonary hypertension, which causes high pressure in the blood vessels connecting the heart and lungs, with other symptoms can including fatigue, blackouts and swelling around the ankles, arms and stomach.
Now his mum Lea wants more people to recognise the signs of the condition and is sharing her story in support of PH Week next week.
She said: ‘Will would want us as a family to raise awareness of this devastating disease, which we had never heard of and lay hidden and undetected.
‘It’s a silent, invisible disease and you would never have known that Will was so poorly just by looking at him.’
Will, a former student at Bishop Luffa School in Chichester, was put under the care of the Royal Brompton Hospital in London, one of just nine specialist pulmonary hypertension centres in the UK, and he received a heart and double lung transplant at Harefield Hospital in December 2017.
He died less than five weeks later, following distressing complications.
Lea said: Will’s diagnosis came out of the blue and it was just 17 months from when he was diagnosed to when he died. We have been totally devastated and his death has left an abyss of grief that time doesn’t heal.
‘I feel like his life was robbed and I don’t want any other family to go through this.’
Every Christmas, Lea makes ceramic robin tree decorations to raise money for the Pulmonary Hypertension Association and Will’s friends and family have raised thousands for the charity in his memory.
Lea added: ‘I remember my son as a strong, loving man who lit up a room and lived life to the full. We just miss him so much.’
Iain Armstrong, chair of the PHA UK, said: ‘Pulmonary hypertension is very rare and because its symptoms are so similar to more common conditions like asthma, it can take a long time to diagnose. For some, the outcome is devastating.
‘We’re very grateful to Lea for sharing her family’s heart-breaking experiences and for the dedicated fundraising in Will’s memory.’
To find out more about pulmonary hypertension or get involved with PH Awareness Week visit www.phauk.org