Jack’s story: 44 metres for local children’s hospice

Jack’s Mum was once told that her son would never be able to sit up on his own, let alone walk. Eight years later, Jack has walked up and down his garden 11 times to raise money for Chestnut Tree House.

To support Jack on his fundraising journey, please visit www.justgiving.com/emmaswood

Meet Jack. “Jack is just the happiest little dude, he wakes up and goes to bed with a smile on his face” says Mum, Emma. Like many eight-year olds, Jack 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. “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.

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, 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.”

Three years on, the family have regular visits from the community care team who visit the family 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 the girls coming to visit. Sometimes they stay in, sometimes they go out – usually McDonalds is involved, Jack loved McDonalds!”

For 17 years Chestnut Tree House has been there for local children and families, like Jack’s, when it matters most. But coronavirus is having a devastating impact on their funding.

“When we found out that it costs £400,000 a month to provide their care services and the charity is losing 70% of their monthly fundraising income, we just knew that we had to do something. All of the services are provided free of charge, and they are always there for the whole family, I don’t know what we’d do without them.

“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 make the most of our time outside and raise some money for Chestnut Tree House at the same time!”

On Monday 27 April 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 11 times with Mum, Emma, and Dad, Kevin by his side.

“We took on this challenge because we don’t know what we would do without Chestnut Tree House. They are there for our whole family, not just Jack.

“For example, last year, I had an operation that left me unable to move for weeks,” says Emma. “I was scared, I didn’t know how I would look after Jack when I was recovering. 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.

“They are always there for us. I do not know what we would do without them. Jack was in a place he loved and was safe, I could recover. They are amazing. That is all I can say. They are amazing.

“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 as Jack has a life-shortening condition, but they make it that little bit more bearable.”

Due to the outbreak of Covid-19, Jack and his family have been self-isolating 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!

“So, that is why we took on this challenge and Jack walked an amazing 44 metres. This is something we were told Jack would never be able to do. Now look at him!

“Chestnut Tree House is amazing, and they need your support now more than ever. So, please fundraise or donate! Every penny helps. If Jack can do it, then so can you. If Captain Tom can do it, then so can you.”