Julia’s House

“We’re so proud of Adam”

Mary Sevenoaks from Dorset tells us how Julia’s House has made it possible for her son, Adam, 12, to lead as normal a life as possible

We were over the moon when our son, Adam, was born. For the first few weeks, all was well, but then he began to suffer with a string of urine infections, one after the other. The infections would make him very poorly and resulted in his needing corrective surgery before he was 12 months old. Thankfully the operation was a success and Adam was quickly discharged. But over the next 18 months, my husband, Malcolm, and I noticed that Adam wasn’t reaching his milestones, things such as being able to hop, jump and run. To begin with, we were told that this was due to the fact that he had been in and out of hospital a lot as a baby and he would catch up. But at his three-year check he was referred to a community paediatrician for review and then to a physiotherapist for more tests. Adam was four when he was diagnosed with a rare muscle-wasting disease named Duchenne muscular dystrophy (DMD), a life-shortening condition for which there is currently no cure. DMD usually affects only boys and is caused by a lack of the protein dystrophin. Research into DMD has resulted in crucial scientific breakthroughs including laying the foundations of the exciting technology of ‘exon skipping’, which could one day help to bypass the destruction of dystrophin. The condition causes progressive muscle weakness and as the muscle fibres break down over time, they’re replaced by fibrous and fatty tissue, which results in gradual weakness and increased disability. To be honest, most of the science goes over our heads. As a family we prefer to take life as it comes; we stay positive and live for today, rather than the future.

One place which helps us to do that is Julia’s House. Our community paediatrician put us in touch with the charity just after Adam’s diagnosis. Each year, Julia’s House allocates 200 hours for us to use either within the community – whereby one of its staff will accompany Adam to something such as scout camp – or at the hospice and for one overnight weekend, where it also provides Adam with his physiotherapy. When he was small, we used the hours for Adam to play at the hospice, to be with other children who perhaps, like him, didn’t quite conform to the norm. Every quarter, we get a list of activities running at the hospice and he picks which ones he’d like to take part in. Nowadays, Julia’s House supports Adam when he goes to Weymouth South Scout Group. With the charity’s assistance he was able to take part in a district scout camp in June, which was fantastic. And last December, he was helped by Nurse Pete to take part in a sponsored four-mile night hike and sleepover – the money raised for Julia’s House by the scout group totalled £1,300. Everyone involved with the scout group sees first-hand how important this help is for Adam and how important it is for other children to be similarly supported. As Adam grows up, it’s vital that he has male carers to look after him. Adam has a great rapport with Neil, who’s helped with his care since he was six, and they’ve developed a real bond. He’s also very fond of his regular carers, Ashley and Andrew.

Julia’s House also organises social events for parents and Malcolm has taken part in ‘dads and lads’ events such as go-karting, shooting and brewery tours. I’ve enjoyed the odd pamper session with other mums – it’s a great way to chat and keep in touch with people who totally understand what we’re going through while having something as lovely as a manicure.

Until about 12 months ago, Adam could manage to walk unaided, unless we were covering long distances, but now he predominantly uses his power chair (electric wheelchair) to get about. We admire the fact that he continually pushes the boundaries of a young disabled person and is always up for a challenge. Malcolm and I heard that tae kwon do could be incorporated into his physio to make it more interesting so Adam joined Dorset Martial Arts with two of his able-bodied friends. He really took to it and as his mobility reduced and he became more reliant on his wheelchair, the club adapted and judged him on what he was able to do. Adam has strived to work his way through the belts and recently achieved his ultimate goal of becoming a black belt. As if that were not achievement enough, he’s now aiming for the next level of black belt – 2nd dan!

Last Christmas, AFC Bournemouth came to visit Julia’s House with their manager, Eddie Howe, who’s also a patron of the charity. Adam and his friend Regan were delighted to meet them and challenged two of the team members to a game of FIFA– it was a monumental experience that the boys will never forget. Malcolm and I regularly take Adam to watch them play and I’d say he’s now one of their biggest fans. Adam’s very determined and he’ll have a go at anything, no matter how difficult it may seem. He enjoys competitive sport and plays powerchair football for AFC Bournemouth Warriors, with whom he trains every week, and they play matches every couple of months. It helps that two of his teammates also go to Julia’s House and they’re all good friends.

Sometimes, with help from Julia’s House, the three friends will go to the cinema and have a meal out afterwards just like other boys their age, which is incredibly important to him. Over the years, we’ve built up a trusting relationship with the wonderful staff at Julia’s House. They’ve been with us on our journey and we know that we can count on them whenever we need them, and that means so much.

 

Total raised £30,095

THE FACTS

Julia’s House is a children’s hospice charity offering care and comfort to families in Dorset and Wiltshire.

When a baby is born with a serious medical condition, Julia’s House will provide crisis support to the parents, ensuring that they can cope at home and understand they’re not alone.

Care is tailored to the needs of each individual child and their family, with support given in their own home, in the community or at a hospice.

Parents of a child with complex needs can become worn down and isolated, and for these families, Julia’s House’s respite care is a lifeline.

Nurses and carers organise trips and attend community events providing respite care as and when it’s needed, a day at the beach or a family swim – simple pleasures which other families take for granted.

For more information, visit juliashouse.org.

 

The £30,095 raised in The Candis Big Give project is being used to fund the salaries of a nurse and two senior carers to support teenagers with degenerative conditions as they face the challenges of declining health.

 

Make a difference

 

Action Medical Research
What it does: Finds and funds cutting-edge medical research across the UK to make a difference to sick children.

Candis Big Give project: To find new treatments for juvenile Batten disease, a rare and fatal inherited disease with devastating symptoms.

Location: National

Total raised: £42,881

 

The Clatterbridge Cancer Charity

What it does: The only dedicated charity for patients and research into cancer at The Clatterbridge Cancer Centre.

Candis Big Give project: To provide two rooms at the new specialist cancer hospital in Liverpool.

Location: North-West

Total raised: £45,427

 

Theodora Children’s Charity

What it does: Improves the lives of children in hospital through weekly visits from trained entertainers called Giggle Doctors.

Candis Big Give project: To fund visits to 30,000 children, helping to distract them from pain and fear through music, magic and laughter.

Location: National

Total raised: £75,484

 

Muscular Dystrophy UK

What it does: Provides advice and support for those with muscle-wasting conditions.

Candis Big Give project: To fund two PhD students and a clinical research fellow for a year of research.

Location: National

Total raised: £97,514

 

The Lullaby Trust

What it does: Offers specialist support to bereaved parents when a baby dies unexpectedly.

Candis Big Give project: To fund a three-year PhD student researching into sudden unexpected infant and childhood deaths.

Location: National

Total raised: £88,770

 

The Brain Tumour Charity

What it does: Funds pioneering research, raises awareness and gives support to those affected by brain tumours.

Candis Big Give project: To launch a national early-diagnosis campaign for adults, to ensure early treatment to increase survival rates.

Location: £62,580

 

Spinal Muscular Atrophy Support UK

What it does: Supports and empowers people affected by muscular atrophy.

Candis Big Give project: To give free practical and emotional support to children suffering with the condition through an outreach service, events and a volunteer peer support network.

Location: National

Total raised: £13,670

 

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