Family stories

Jacob’s story

Meet Jacob

Just like many young boys, Jacob is a big film fanatic, loves spending time outdoors and splashing around in the swimming pool. “Jacob is a sociable little boy. Everyone knows him in our local community, he loves it when people come up to us and have a chat” says Mum, Elaine.

Jacob lives with his adoptive parents, Elaine and Bill, in their family home near Seaford, East Sussex. When the couple first met Jacob, they were told he had Global Development Delay, meaning that Jacob is significantly delayed in his cognitive and physical development. “When he was about 18 months old, we managed to get him to sit up on his own with lots of encouragement, but it would only last about 30 seconds before he would topple over.”

Jacob being cared for by Chestnut Tree House

Getting Jacob diagnosed

With the family being in and out of hospital all the time, they spoke to many specialists about Jacob’s struggles. “I remember they kept telling us he would be able to sit up soon – but that wasn’t the case at all. It became obvious soon after that there were more issues.”

The family soon found out that Jacob has severe complex medical needs, he has the highest grade of cerebral palsy, severe breathing issues, and uncontrollable seizures. “He has no independent movement so he can’t do anything by himself. For example, if you put him into bed at night, he will be in the same position in the morning.”

Finding Chestnut Tree House

For the first year of Jacob’s life with Elaine and Bill, the family were searching for extra help. “We kept asking if there was anything or anyone out there who could help Jacob, even just some activities for him would’ve been great. We wanted guidance, play therapy, we just wanted a group to take him to” says Elaine. “I took him to a Mother and toddler group for about a year and he just got so frustrated that he couldn’t join in. Other children were running around having fun, and that’s simply something that Jacob can’t do.”

When Jacob was two years old, the family was told about their local children’s hospice, Chestnut Tree House by a member of the hospital outreach team. “I remember when they told us about Chestnut Tree House, all I thought was – oh my goodness, what a lifesaver this will be! This is going to be so good for Jacob.”

The family soon booked their first overnight stay at the hospice building near Arundel. “I don’t know what I was expecting, but the moment we walked through the doors we were amazed. We could not believe how much care and love was there. It was fantastic. It was a huge eye-opener; we could see all the opportunities there for Jacob. And for us, it was the first time we could sit down and relax for a very long time.”

Jacob and nurses at the hospice

Spending time together, and apart

At Chestnut Tree House Elaine and Bill spend time with Jacob and also spend time together as a couple. “Sometimes we go out and explore, something that we can’t usually do. But other times, we stay at Chestnut Tree House with Jacob, it’s nice to get away. All of us together. Not having to worry about the cooking, or the cleaning, or the washing up. Just spending precious time as a family.”

“Jacob loves visiting the House. His favourite thing is swimming, where he can splash around in the pool. He also loves the eye gaze machine where he makes some fantastic artwork. He is a natural! He even makes us a calendar every year that we proudly display in our home. 

The family has been accessing Chestnut Tree House for over six years now, giving them the chance to meet new friends and speak to people who understand. “Bill and I have met a lot of parents and that is something special to us. It means that we can speak to people in similar situations.”

Some of the friends that the family have made at Chestnut Tree House have sadly been through bereavement. “It’s shown us the other side of care that Chestnut Tree House offers. We have seen the way that they look after the child, their parents, and their whole family. They are amazing. I can’t praise them enough.”

Jacob at the hospice

"He loves the music room, the woodland walk – just everything! He even cries when we take him home because he has such a good time."

Getting out and about

As well as short breaks at the hospice, the family has Ruth, a Chestnut Tree House Nurse who visits them at home every month. “Jacob loves it when Ruth comes to visit. Sometimes they stay in, watch a film, or do arts and crafts. But other times they go out and get up to all sorts, they have been for walks, bowling, and trips to the cinema. Usually, Tipping Point is involved, Jacob is a creature of habit and he loves watching that after school.”

“When Ruth comes to visit, we sometimes go out for dinner or do something we can’t usually do. But most of the time we are just too tired, so we sit in the lounge and just chill for a couple of hours. Having dinner on time, relaxing, and just spending time together without having to worry about Jacob.”

When asked what Chestnut Tree House means to the family, Elaine said “I don’t know what life would be like without Chestnut. It would be awful. It would feel like something had been cut out of us. In many ways, they are our lifeline. It would be unbelievably sad for Jacob, he would miss out on so much. He is really happy when he comes back from his visits. He loves it. ”