Sebastian’s Action Trust

“They help keep our spirits up”

Ed Kemp, 42, from Hampshire, tells us how Sebastian’s Action Trust has made a different to his whole family

Ed Kemp, 42, became concerned about the health of his elder child, Matthew, now seven, the moment he was born. “Matthew stopped breathing after birth and needed resuscitation, which was terrifying,” remembers Ed. “He was also very weak and floppy and had physical features – such as a high- arched palate in his mouth – that seemed to point to a medical condition. It was obvious there was something wrong, although my wife, Sarah, and I didn’t know what.”

Matthew remained on a ventilator in Southampton Hospital for three months. “We were told multiple times he didn’t have very long left and, at one point, that they would be turning the ventilator off that night – which thankfully didn’t happen. The doctors also went through a whole raft of tests. They ended with muscle biopsies, which were sent to a specialist doctor in Hammersmith, along with some photographs of Matthew.”

Matthew was diagnosed with myotubular myopathy – a severe and rare congenital condition, almost exclusively affecting boys. It affects muscle development and strength, causing difficulties with posture and movement. The condition can also lead to complications such as chest infections and airway blockage due to difficulties with coughing, and life-threatening problems with breathing.

“Although it was a relief to get the diagnosis because at least we now knew what we were dealing with, it was also extremely difficult,” says Ed. “We didn’t know anything about the condition and were told not to google it because of the awful stories you can find online. Of course we did, but we also came across some great charities that gave us information and support.”

After four months in hospital, Ed and Sarah were allowed to bring Matthew home, where he was regularly ventilated overnight using a mask ventilator. However, at nine months old, he was back on the intensive care unit due to difficulties breathing. “We made the decision then for Matthew to have a tracheostomy – where a tube was inserted into the windpipe and connected to a ventilator. Since then, he has been ventilated this way 24/7, as if the ventilator comes off he will stop breathing.”

As Matthew developed, he started having regular physiotherapy sessions. “Thanks to the physio, his muscles are getting stronger and he is very dextrous, but he lacks the strength to pick things up and still requires help with everything. He can’t stand or weight-bear so has to be hoisted everywhere and use a power wheelchair. He struggles with swallowing, too, so needs to be fed through a tube in his stomach. He started talking
in the last few years, which is great, but it is very difficult for him with the tracheostomy and requires a lot of strength.”

Getting out and about together as a family has also been difficult. “It takes about an hour for us to get ready and make sure we’ve got all the emergency bags, ventilators, oxygen etc, and get out of the house. We also need to check places are accessible, so often just stick to places we know.”

Several years ago, the family were approached by the founder of the charity Sebastian’s Action Trust, which provides respite holidays, events and activities to very sick children and their families. “The charity is all about enabling families to spend time together in a safe and accessible environment, which has been invaluable to us. We have stayed at its purpose-built facility, The Bluebells, for holidays, but also, as it is just five minutes away from us, we will often just pop in at the weekend or after school.

“Matthew and my five-year- old daughter, Charlotte, love using the facilities – including the swimming pool and art room – and Matthew loves the freedom as there’s space for him to zip around in his wheelchair and explore, with a carer following behind. I can have a cup of tea and relax, knowing they are happy and safe.”

Meeting other people who understand what they’re going through has also helped. “We try to make it to as many of the charity’s events as we can – including arts and crafts events, a Lego day, and its annual ‘Christmas in July’ event – so have made lots of friends.

I also attend a dads’ group and Charlotte now attends a weekly club for siblings, which provides her with a network of people she can talk to who understand her situation.”

The charity has helped to relieve some of the worries that come with caring for a child with a serious health condition. “Being in this environment – dealing on a daily basis
with complex medical needs, an uncertain life expectancy, the appointments, the emergencies, the stresses, all that sort of stuff – is like being on a roller coaster, and you don’t know what to expect from one day to the next. The fact there is somewhere we can go, irrespective of what’s going on, and be supported is critical to keeping our spirits up.

“Whether it’s via its counselling service or the listening ear of one of its outreach workers, I know there’s always someone there to talk to and offer emotional support. The charity gives us peace of mind, a place to go and have fun, and support so we can keep on dealing with the challenges of this life.”

The hidden savings to the NHS that Sebastian’s Action Trust’s outreach support provides are valued at more than £1.4 million every year

The number of children and young people it supports has increased by 60 per cent in the last year

The charity currently supports 1,690 people from 528 families living in Berkshire, Hampshire, Surrey, Buckinghamshire and Oxfordshire

Supporting families with outreach and respite care


➸ The money raised in The Candis Big Give will help the charity to increase its support of families affected by childhood illness, by helping Sebastian’s Action Trust to provide dedicated, practical outreach support in the local community; in hospital, in the home and at its new Family Outreach & Respite Centre, The Woodlands. The services offered will include financial advice, well-being activities such as art and music therapy, counselling, and a calendar of events and activities to promote social inclusion. to find out more.

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