Jack’s story

“Jack is just the happiest little dude, he wakes up and goes to bed with a smile on his face” says Mum, Emma.

Jack lives in Portsmouth with his Mum, Emma, and Dad, Kevin. Like many eight-year olds, he loves spending time outdoors jumping on his trampoline and playing in the garden.

But for Jack’s family, his favourite things were once a distant dream. “Jack is our beautiful miracle baby. At three weeks old, we thought we would have to say goodbye to him. They told us he would never walk, never sit up, never speak.” Jack was born with Lowes syndrome, a genetic disease that primarily affects his eyes, brain, and kidneys, resulting in Jack having severe complex medical needs and requiring 24-hour care.

Montage of Jack's home pics

Into the unknown

When Jack was four years old, his school nurse recommended that the family seek support from Chestnut Tree House. “At the time I had heard of them, but I didn’t think we would qualify for their services. It took me a long time to come to terms with the word hospice. I did not know what to expect. A hospice sounds like a scary place,” says Emma.

After their referral, the family were invited to spend some time at the hospice building near Arundel. “I remember walking in and thinking, this is amazing. Everyone made us feel at home, from receptionists and the housekeeping team to care staff, everyone made us feel welcome.”

“Jack got treated like absolute royalty, anything he wanted, he got. He loved it. I expected it to be grey and dull and quiet, but it was not. It was loud, bright, and lovely. Within an hour of being in the house Jack disappeared and was doing his own thing, he just loved it.”

We relish every day that we get to spend with Jack and just marvel at how much he has defied the odds and continues to achieve.

Hospice care in their own home

Three years on, the family have regular visits from the community care team who visit them in their own home in Portsmouth and take Jack out to explore the local community. “When the team visit, my partner and I have date nights. We go to the cinema, we go out, we go to parties! Plus, Jack loves it when the care team visit. Sometimes they stay in, sometimes they go out – usually McDonalds is involved, Jack loves McDonalds!”

“All of the services are provided free of charge, and they are always there for the whole family, I don’t know what we would do without them.”

Montage of Jack at activities in the House

Care for the whole family

In 2019, Emma had an operation which left her unable to move for weeks. “I was scared, I didn’t know how I would look after Jack when I was recovering” says Emma. “So, I spoke to the care team at Chestnut Tree House and they said ‘we have a room for you, and we have a room for Jack. Come in now and we can look after you,’ they were amazing. Jack was in a place he loved and was safe, I could recover. They are amazing. That is all I can say.

“It’s important to let you know that they are also there for the rubbish side of it as well. We know that time will come; Jack has a life-shortening condition. But we know that they make it that little bit more bearable.”

Due to the outbreak of COVID-19, Jack and his family had to shield for a number of weeks. “Chestnut Tree House have kept in regular contact, we’ve had texts, phone calls, everything! They are always there for us.

“They delivered an activity pack the other day which was a lovely surprise. Jack is blind so he loves sensory stuff. He loves bubbles, so there were lots of bubbles in there, sensory toys, it was all centred around Jack. They thought of everything, even glue sticks so we do not have to go out!”

Throughout the lockdown, Jack has also taken on his own personal challenge. “We were trying to think of something we could do that was enjoyable and achievable for Jack. We are spending so much time outside playing, I thought, let us spend some time outside and make some money for Chestnut Tree House at the same time!”

Tackling the challenge of a lifetime

On Monday 27 April 2020 Jack, a little boy who was once told he would never be able to sit up on his own, walked up and down his garden an incredible eleven times with his parents by his side to raise money for their local children’s hospice.

“We are so proud of him. He loved taking on his challenge. We don’t know what we would do without Chestnut, we wouldn’t even want to think about it – it would be a nightmare. I’d have no hair for starters! But seriously, they are there for everything. They are always on the other end of the phone, they are so friendly, knowledgeable and all-round amazing. They let Jack live his best life.”

“We wanted to take on the challenge to show Chestnut Tree House just how much they mean to us. If you are thinking about supporting them, then please – just do it! Every penny helps.”

Donate to help families like Jack's

Over £5 million is needed every year to provide hospice care for local children and their families. Very little of this comes from government funding, the rest comes from the amazing donations we receive. We couldn't do it without you.

Jack on an activity day out of the House

Please note: Jack’s story was originally published in 2020, and updated in 2023 with more recent pictures of him.