A FAMILY who have helped hundreds suffering with the same disease as their ‘fighter’ of a son have launched an ambition to create a hospice.

The Abel Foundation, which helps those diagnosed with the life-threatening illness Mitochondrial Disease and their families, has begun its fundraising by hosting a music festival in its bid to open a centre of excellence in Andover offering support, information and care.

The charity was founded after Pride of Andover award winners Tony and Claire Noakes’ son Abel was diagnosed with the disease and was given only hours to live but has beaten all odds and is now four-years-old.

Tony said: “You feel disheartened, you’re in the hospital and you’ve got this child and you don’t know why he has this disease, every day you are wondering is he still going to be here, am I going still have my son?”

“For me the experience when we got diagnosed, we are given a priest and a psychiatrist and told our son was going to die. When we took him home, we were trying to find help and support there was nothing.”

Over the years, the foundation has helped families across the country with not only information but also provided thousands of pounds worth of equipment, and so far this year has spent more than £66,000 supplying much-needed kit.

“We currently help as many kids as we can with equipment, the average piece of equipment is £1,200 to £1,300, whilst trying to save for our own hospice.”

But like so many others, the family and its supporters have found that there is a gap in care and support for those living with the disease and it has sparked a huge ambition by the Abel Foundation to open its own facility.

Tony added: “Most hospices can’t cope with Mitochondrial due to cutbacks and staff shortages.

“As it is such a life-changing thing we want to bring them [families] to us, learn what the disease is, how they can readjust their lives until they are ready to go home. Everything changes dramatically.”

It is hoped that the hospice will be able to benefit from specially trained doctors, nurses and carers to provide world class care.

Tony said: “If they don’t want to leave their kid, we can be there to support them. When my son was born, we spent long periods of time down the hospital. The hospice will give people somewhere that is a safe, homely environment.”

And to help raise money for the hospice and to continue its vital work, The Abel Foundation has teamed up with Sid Dajani of Andover Manor to organise the first ever Music at the Manor Festival on Saturday, August 10.

The all-day live music event is hoped to raise awareness of Mitochondrial Disease and all proceeds will go towards the charity.

Sid said: “It is our version of Glastonbury, rather than a band in a venue it is 10 hours of music which makes it more of a day than an event.”

Sid got involved with the foundation after meeting Tony at an event, years after he learnt about the disease at university and told that was no cure.

Speaking about Abel’s story, Sid said: “This is a miracle of life. It is such an incredible story, we are not giving up hope. That is what this whole concert is about, raising awareness, not just the financial side.

“Andover can be the heartbeat for anyone with Mitochondrial, for information and support. It will become the go-to place.

“This is absolutely ground-breaking and for me I believe they are going to do it.”

Tony said: “It [the festival] is going to raise massive awareness as the more people know the more people are aware. It will help us buy equipment in the short term as well as saving up for the hospice.”

Ten bands will play during the event, with a barbecue and bar available from 2pm to 11pm.

Tickets cost £5 or £10 on the gate. To buy, go to The Rockhouse, The Station Inn or email karen@theabelfoundation.org.uk.