A talented artist who was left “perilously close to death” is brushing aside poor health to organise a fundraising exhibition. Claire Hall admits it is a “miracle” she is still alive after a harrowing Vascular Ehlers-Danlos Syndrome episode.
The life-limiting genetic condition is an internal ticking timebomb caused by defects in collagen – the protein that plays an essential role in the structure and function of connective tissue, resulting in the fragility of skin, arteries and hollow organs. It leads to aneurysms and spontaneous ruptures of arteries.
Following an episode in late April, Claire was left fighting for her life in intensive care for two weeks in an induced coma. Now back on the road to recovery, the 48-year-old is switching her attention back to art by showcasing her work as part of the ‘Cambridge Open Studios’ July Art Festival, which runs annually during the four weekends of July. It provides the opportunity to visit working studios and buy art direct from artists.
Mum-of-two Claire is displaying her work at home in Haverhill on the 1st and 2nd July and all proceeds are being split between East Anglia’s Children’s Hospices (EACH) and Annabelle’s Challenge.
“It’s an absolute miracle I’m still here and this latest episode was certainly the most frightening yet,” she said.
“It left me perilously close to death and I’m immensely relieved to be back with my boys. It’s a reminder that life is so short and fragile and that’s the theme of my art.
“As a family, we’ve learnt to make each day count and my paintings are a celebration of that journey. The question I try to pose is that if you had one month to live, how would you make each day count? What would you start or stop doing?
“Any paintings sold will be donated to the two main charities that have supported us as a family and many others who are affected by life-limiting diseases – EACH and Annabelle’s Challenge.”
Vascular Ehlers-Danlos Syndrome is a condition Claire shares with sons Henry, 16, and James, 13. The latter was also born with a congenital heart defect, and, due to complications during surgery, he sustained irreversible brain damage, leading to cerebral palsy.
As a result of his condition, the family are regular visitors to the EACH hospice in Milton. Claire says the hospice has been a hugely important source of support down the years.
“Milton has given us the chance to breathe, even be it just a short break from the 24-hour care James requires,” she said.
“It allows me to take a moment for myself and, more importantly, have quality time with Henry. It means we’re able to do things with him that otherwise wouldn’t have been possible. The hospice is a space to breathe and the counselling we’ve received, have helped us deal with the past traumas of surgery, as well as processing a new diagnosis and the news that it is a life-limiting condition.
“It’s also given us an opportunity to have hope again, through the many family and sibling days the hospice has provided over the years, allowing us to connect with others and feel we’re not alone on this journey. All these things have been the support cogs of a wheel allowing us to navigate the often bumpy, relentlessly exhausting and unpredictable road of caring for a severely disabled child.
“It’s given us opportunities to create and record many special memories, giving us light and renewed hope in our darkest moments. It’s also given us the strength to pick up our armour again as we battle to live long enough.”
The Hall family were interviewed by the BBC after meeting The Prince and Princess of Wales – then the Duke and Duchess of Cambridge – during the Royal couple’s visit to Milton last June. Annabelle’s Challenge is the leading charity for Vascular Ehlers-Danlos syndrome (Vascular EDS) in the UK.
To show your support for Claire and make a donation, head here.