Ethan's Story

Ethan is 7 and is supported by Children’s Hospice South West (CHSW) with his family; mum Heidi, dad Elliott, sister Sofia aged 1½ and brother Arthur aged 5. 

Ethan’s journey with CHSW began right after his birth, when his family faced unimaginable uncertainty. Here, Ethan’s mum, Heidi, shares when they were first referred to CHSW: 

“When Ethan was born he suffered a catastrophic brain damage in hospital and we were at a point where we had to look at whether we needed an end of life route or whether we needed to extubate him and support his breathing so we had to plan for both events which is when we were referred to Charlton Farm children’s hospice.  

My husband and I went to Charlton Farm to look around as that would have been our end of life choice. We saw how amazing and beautiful and supportive it was and decided that this would be the end of life route for us if needed.” 

Against all odds, Ethan’s story took a hopeful turn; 

“Ethan, being the little fighter that he is, decided that he was going to extubate fine and breathe ok and he did amazingly well, better than anyone ever imagined he would. So, we took 1 step at a time, and we eventually made it back home when he was about 15 months old.” 

Once Ethan was home, the family’s relationship with the hospice shifted from end of life planning to much-needed respite care. The family started to have respite stays at Charlton Farm and as time went on, the family’s needs changed, especially after the COVID pandemic. They found themselves looking for a children’s hospice that was closer to home in Taunton and family in North Devon. 

“In 2021, we decided that we would move across to Little Bridge House for respite stays, as although Charlton Farm is great, we went there initially thinking it would be for end of life care and we thought that going to Little Bridge House would be nice because it was just for respite. Also, having family close by would mean we could visit them when we come to stay.” 

Heidi explains that despite Ethans complex medical needs and a diagnosis of Quadriplegic Cerebral Palsy, he is a very happy boy and, although he doesn’t use words, can communicate very well through sounds and body language: 

 Ethan needs 24-hour care and someone with him all the time to make sure his airways are clear. He needs help with manual handling, moving, playing, all of his personal care and all his food through his gastrostomy tube. Ethan communicates with us through his voice and body language; he is such a happy 
little boy with a very infectious smile. Ethan’s siblings are a big support to him and very nurturing, he loves nothing more than spending time with them. 

During the family’s hospice stays there is something to suit everyone. For 1 ½ year old Sofia, she 
enjoys playing with the dollies and 5 year old Arthur loves playing with the Sibling Support Team; 

“He talks about the Sibling Team constantly at home and he also loves the amazing soft play room and the games room and he especially enjoys all of the food, cakes and treats!” 

“Ethan really likes going into the sensory room, and he just loves having someone’s attention all the time. When we are at home, you’re juggling things and can’t always give that full-time attention, but he just loves having someone to talk to. Someone is always there to read him stories, and it’s so lovely that my husband and I get the time to do those things with him as well—play together and have cuddles. 

All those things that can probably easily get missed in day-to-day life, with having other children and taking on more of a care role. But at Little Bridge House, the care is taken from you, so we can properly be just Mum and Dad to Ethan, which is lovely—to be able to have those special moments with him.” 

Another favourite activity for Ethan is the Music Therapy sessions offered to all families supported by Little Bridge House.  

“Ethan absolutely loves Music Therapy and it’s so lovely to hear Ceridwen’s (Music Therapist) feedback after a session as she’s found something that made him belly laugh and it’s so lovely to have that communication from him in different ways through music, those sessions are so beneficial for Ethan.” 
 

In addition to music, there are always new and exciting experiences to enjoy when they are at the hospice; 

 “During our recent stay, the Pets As Therapy team came to the hospice and brought a dog and a 
donkey! It was really fun, and Ethan especially enjoyed taking the dog for a walk around the garden on a lead.” It’s activities like these that the Care Team organise to enrich the lives of the families supported by CHSW.  

For Heidi and Elliott, having the hospice there when they need it most, is a lifeline of support, and their recent emergency stay was arranged to help with Ethan’s pain management; 

“Our recent stay was a big learning curve for me but having the support of the hospice team around and to be able to have time with the doctors and really understand how Ethan shows pain was so helpful and I learnt a lot.  When I’m at home caring for him, I’m not a professional in that area, so it’s incredibly beneficial to have medical professionals that I can talk to in depth and make plans with to use at home and school.”  

During previous hospice stays, Heidi and Elliot, have cherished the opportunity to spend quality time together as a couple, reassured that Ethan’s care is in safe hands. 

As Heidi shares, “We did a spa day, which was lovely, and we have been out for a meal in a local Chinese restaurant near to Little Bridge House, so that was really special. We went to the pub and 
listened to some live music, so it’s lovely that we can sometimes go and just have some time as a 
couple knowing that Ethan is well cared for.”  

Elliott also enjoys taking the children into the hydrotherapy pool whenever the family visits , an activity that isn’t always possible in community swimming pools.  

At Little Bridge House, it’s not just the care and support that make a difference, it’s the friendships and shared understanding that grow between families. These moments of connection, whether through 
conversation, laughter, or simply being together, help make each stay feel truly special. 

“When we are at Little Bridge House it’s always nice to talk to other families staying especially talking to those with older children because they’ve had more experience in this kind of world, so they can offer some advice. Mealtimes when everyone is sat around the big dining table, is like a family getting 
together which is really lovely.”  

The family were recently invited to meet Her Majesty The Queen, the charity’s Royal Patron, when she came to Little Bridge House to mark 30 years of care.  

“It was amazing! We loved it, it was so special, she came over and enjoyed speaking to Ethan about Paddington Bear and Arthur played the horn for Her Majesty, which he really enjoyed, it was just a really special day and something that I never really thought I would be part of ” 

From the moment Ethan arrives at Little Bridge House, he’s made to feel truly at home. The Care Team go above and beyond to personalise his space, creating a welcoming environment filled with his favourite things from books, lights and even a Toniebox.  

For Ethan’s family, Little Bridge House has become a place of comfort, care, and connection, not just during their regular hospice stays, but also when extra support is needed. From seasonal events to symptom management, their relationship with the hospice has grown over time, shaped by building trusted relationships with the Care Team especially their key contact Vicki who has provided support not only for Ethan but for his parents too. 

“We generally have 2 stays a year and then this recent stay was an emergency stay for symptom 
management but we also try and come up for the day events; the summer fayre, Christmas events with Santa and even Christmas dinner days.” 

“Vicki, is just brilliant and has built up a really lovely relationship with us and I feel that I can talk to her about anything.  She’s done a home visit for us recently, and that was really lovely to see her in our home environment she’s amazing.”  

“Little Bridge House is just an amazing place, it’s incredible how supportive it can be and how much of a lifeline it is for us. Something that’s a charity, who are there to help us, is just incredible and we are so thankful for the support of everyone. Having the time with professionals, you don’t get that in the NHS, you don’t get the time to really sit down and talk through things because the NHS is so stretched but at the hospice you have really got the time and they get to know Ethan and really support us as a family. It’s just amazing, we love it.”  

“Every time I go there I learn a new thing about how to care for Ethan, like the best way to give him his medication, something I was never told before, but the team at the hospice are able to spend that time really giving the best care and advice, it has been so beneficial for us. We are so grateful for their 
on-going support.”