Instinct told Sharon and Christian to be concerned that their firstborn son was growing so slowly, but they were assured baby Matthew had just inherited their own short height.
It wasn’t until Matthew collapsed aged 18 months that they discovered he had severe pulmonary hypertension – a rare disorder affecting the blood vessel that leads from the lungs to the heart hardly ever seen in children. Suddenly they had to deal with the news that their little boy must have constant access to oxygen, needed complex medication and faced the prospect of a heart and lung transplant.
Told about Demelza, Sharon initially rejected the offer of help. “I didn’t want to be involved with a hospice,” she explains. “I just wanted to believe that everything was going to be fine.”
Finally persuaded to visit Demelza Kent for a look around, Sharon discovered the range of respite and family support services available, and the couple began coming along for coffee mornings to meet other parents, and to have a break staying overnight in a family room while the nursing team helped care for Matthew.
The couple did all they could to give Matthew a normal childhood. But his condition deteriorated and in March 2007 they were told he was unlikely to see another Christmas without a transplant. On that very day, they received the call from Great Ormond Street Children’s Hospital to say a donor was available and a rapid response ambulance was on the way to their home in Gillingham.
Despite complications along the way, Matthew was able to go to his local primary school brimming with new-found energy. It wasn’t until he was due to move on to secondary school at 11 that the family turned to Demelza again.
Concerned that their son might struggle with the move to a school that could deal with his medical needs but where he knew no-one and would stand out from the crowd, the family took up an offer of art therapy.
Matthew worked with Demelza art therapist Josie Mahoney once a week for over a year, using paint and clay to explore his emotions.
“He has been able to work out his feelings and frustrations. It’s something just for him - he comes out relaxed, and it’s given him confidence,” says Sharon.
“Demelza is there for Matthew, but they are there for the rest of the family too. They have given us time for the other children [Matthew now has two brothers and a sister] and helped them through sibling days – after all, it’s their childhood too.”
Could you make a regular donation of £10 to pay for art therapy sessions for more young people like Matthew? You can set up a payment here.