James Hall has a life-limiting genetic condition called Vascular Ehlers-Danlos Syndrome. It is an inherited connective tissue disorder and something the 12-year-old shares with mum Claire and older brother Henry. The syndrome is caused by defects in collagen, the protein that plays an essential role in the structure and function of skin, cartilage, bones and connective tissue.
Claire, Henry and James’s condition means their collagen is fragile and friable, leading to spontaneous ruptures of blood vessels and organs. In addition, James was born with Pulmonary Atresia, 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, James, Claire and 15-year-old Henry, who live in Haverhill, are regular visitors to Milton. Claire says the hospice has been a hugely important source of support down the years. She said: “Milton has given us the chance to breathe, even be it just a short break from the 24-hour care James requires.
“It allows me to take a moment for myself and, more importantly, have some 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 helped us deal with the past traumas of surgeries, 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 Duke and Duchess of Cambridge, during the Royal couple’s recent visit to Milton.