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Liam Jones with mum Natalie
Liam is 12 & was diagnosed with Duchenne Muscular Dystrophy when he was 4
Following his diagnosis Liam started coming to Little Harbour children’s hospice for short breaks with his family in Summer 2013.

Duchenne Muscular Dystrophy is a rare genetic disease that causes muscle weakness and wasting. Children born with the disease have a mutation on their dystrophin gene meaning that they cannot produce dystrophin, which is a protein vital for muscle strength and function.

Mum Natalie remembers the journey to diagnosis well even down to the exact time of Liam’s appointment, “You don’t forget things like that” she says. “We saw the doctor with Liam in the January, he had blood tests in the February and by the end of March we had the diagnosis.

I remember the doctor saying to us ‘97% of children can walk out of here fine but 3% need further investigation and Liam is one of those. Liam Jones and family

By the age of seven Liam was in a wheelchair full time, Natalie said “I had never had any friends or family with a disability so suddenly being thrown into a life with Liam who was in a wheelchair full time was a real adjustment.”

Liam is now losing the strength in his arms and upper body and Mum Natalie says “It is devasting to watch this disease take away parts of my son bit by bit.”

Reflecting on their journey so far Natalie commented “You grieve after a diagnosis and it takes a long time to get used to it. Nobody wants to think about their child dying but I want Liam to do all he can do now while he can and we know that Little Harbour is here for us when things do get tough.”

Liam has been visiting Little Harbour for seven years for short breaks with his parents and siblings. During his stays he loves playing on the Playstation, watching films and spending time in the jacuzzi.

“Having the chance to go in the jacuzzi is such a treat for Liam because he spends most of his time in a wheelchair so it gives his body the chance to relax.” says Natalie. “We enjoy doing some painting together in the art therapy room or even just cuddling up on the sofa and watching a movie. It’s those times which are really special, spending quality time together where I am not distracted by the housework or our other children.”

Liam and his sister RylanAt Little Harbour Liam is cared for by the Care Team, his siblings are supported by the Sibling Team leaving mum and dad quality time to spend with Liam and as a family.

Little Harbour is an hour away from where Natalie and her family live in Plymouth and she describes the hospice as a second home; “It takes me a couple of days to relax, it’s really strange not having to cook tea or do the washing and just being able to relax and enjoy our time together as a family when we are at Little Harbour.”

Liam’s younger sister Rylan (9) has grown up coming to Little Harbour and loves their stays, always keen to know when they will next be visiting. Rylan spends her time at Little Harbour playing with the sibling team and loves hunting out new costumes from the dressing up collection.

Liam has 5 siblings and Little Harbour has catered for the whole family staying at the hospice before, the hospice has been a real support to the whole family since Liam’s diagnosis.

“The peace of mind that this place (Little Harbour) gives you is amazing, I know I can call you anytime, even in the middle of the night and someone will be on the end of the phone to support me.

Being in this situation you have to choose a mindset and you can either let it consume you, or you can flip it on its head and make the most of every moment and that is what we try to do. I feel privileged to have a child with a disability because it changes your perception and outlook on everything” said Mum Natalie.

We know that Liam isn’t going to get better but knowing that Little Harbour and the amazing team are here for us whenever we need them gives us so much peace of mind.

"I know that this is where we will come when things get tough and I know that the team will know exactly what to do and how to support us as a family.”

“Over the years we have seen the team at the Little Harbour and the support they offer grow. They are always striving to make the service the best it can be for families and adapt to our needs and it is truly an amazing place.”

Liam Jones and mum Natalie