Mason's story

Playing a key role in Mason's care.

When Mason was born with the skin missing from his feet and leg, doctors diagnosed him with Recessive Dystrophic EB, a painful and life threatening genetic condition. EB causes physical disabilities with blistering and shearing of the skin and internal linings from even the gentlest activity.

Unfortunately it’s incurable, causing Mason’s skin and internal body linings to blister at the slightest knock, resulting in painful, open wounds. Such is the severity of Mason’s condition that, when he was younger, the lining of his oesophagus came away, leaving him unable to swallow food, fluid or medication. He is now fed through a gastrostomy button in his stomach. Sores and blisters form on his skin on a daily basis and he lives a routine of lancing blisters, bandaging, coping with pain and making regular trips to hospital.

In 2013, Mason’s care package was moved across to Pulse Community Healthcare. His parents had been involved in the recruitment process for the original care team and, on their request and to limit the impact on Mason’s emotional wellbeing, all his team members transitioned over too.

At this point, the care package included day and night support. As with any change, the first week involved familiarising everyone to a slightly different routine, but within a couple of weeks the package was back on track and operating smoothly. Since then, Mason has started attending his local school, which his care package has altered to accommodate; he receives care every other weekday night and every Sunday night, as well as one day shift per week and one Sunday day shift per month.

These changes have really helped improve the whole family’s quality of sleep and, in addition, Mason’s parents can now get involved in activities with their other daughter that wouldn’t suit Mason’s age.

In line with their mission, Mason’s Pulse Community Healthcare team prioritises his well-being and independence, helping him to do his favourite things: cooking, playing board and computer games, reading stories, going for walks to the shops and the forest, feeding his many pets and whizzing around on his scooter. He’s even recently taken up golf. Pulse Community Healthcare helped Mason’s family in their successful application for funding to help with a new extension and he now has his own specially adapted bedroom, dressings room, and bathroom.

Since the team has managed his care package, Mason’s confidence and self-esteem have received a huge boost and he’s much more willing to meet new people. He’s confident and loved by his carers who know exactly what he needs to feel happy and secure. He’s also much better at spending time away from his family, with whom he is very close.

The Pulse Community Healthcare team encourages Mason’s parents to play a key role in choosing his care team, understanding that they instinctively know who he’ll bond with.  On his parent’s request, any new team members initially care for Mason during the day before starting night work in order to get to know him, and for him to get to know them.

Today, despite suffering from this debilitating condition, Mason’s quality of life is very good. He has a great sense of humour and is full of life. He’s a source of inspiration to all who meet him, and brings joy and happiness to his family and care team.

For more information on EB visit www.debra.org.uk