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Caleb’s story: support for the whole family

We shared this story as part of National Siblings Day 2018 to highlight the special bond between siblings Caleb and Scarlett, and the support children’s hospices give to the whole family.

Ten-year-old Caleb has always been a little bit in his own world, according to his mum, Michelle. Like many young boys, he likes to listen to music, sing and go swimming, but he is not able to do these things independently like other children his age. Caleb has lost his sight, has to use a wheelchair, is under the care and review of multiple medical disciplines, professionals and hospitals, and will need lifelong medication.

At four months old, Caleb was diagnosed with a rare bone disorder called osteopetrosis. The condition caused him to lose his sight completely and he developed hydrocephalus (a build-up of fluid on the brain), which led to significant brain damage. Just five months later he underwent a bone marrow transplant, his older sister Scarlett being a donor match.

The transplant was eventually successful, but Caleb was left with profound and multiple learning difficulties, severe developmental delay, physical limitations, gastrostomy and blindness. Aged four, he was also diagnosed with autism and minor problems with his ears and digestion.

The family had previously been supported by another children’s hospice, but came to Chestnut Tree House in 2012 when they moved to Brighton. Michelle says, “At first we were quite desperate and it felt alien and a bit sad to be using a hospice. It’s not something you ever expect to be doing as a parent.” However, they quickly found that it made a massive difference to their lives. “They are not depressing places, and are actually full of fun and laughter,” says Michelle. “We can all relax when we’re at Chestnut Tree House and take a breather from the day-to-day struggles and challenges.”

Caleb loves to go swimming in the hydrotherapy pool at the hospice, play on the swing in the garden and on the musical piano mats in the play area. But it is not just Caleb who benefits from the facilities at Chestnut Tree House. His sister, 12-year-old Scarlett, has taken part in a number of activities for siblings, helping her to understand that she is not alone – something that is important for the whole family.

“I honestly don’t know what we’d do without the support of Chestnut Tree House,” says Michelle. “The respite breaks allow Caleb to have 100% attention, and we can go away on short breaks or just have a rest at home, in the knowledge that he’s safe and well cared for.”

As well as visiting the hospice, Caleb receives visits at home from the Community Team in Brighton. This means Michelle and Caleb’s dad, Matt, can spend some quality time with Scarlett, and together as a couple. This usually involves doing something simple, like going out for a meal, walking the dog, or going to the cinema or beach, but these are all things that are difficult or impossible when Caleb is with them.

The support we receive makes such a huge difference to our lives. Knowing that Chestnut Tree House staff are there for us makes us feel less alone and more able to cope with whatever life throws at us.

Michelle, Caleb and Scarlett's mum

If you would like to access support from your local service, head over to our service directory.

To learn more about supporting siblings of children with a life-limiting condition, read our Understanding Siblings’ Needs factsheet.

Family stories