20th June 2023
Kavarli has a chromosome condition, which severely impacts his neurological development. This means he is unable to walk, talk and feed orally. He also has chronic lung disease and spends a lot of time in and out of hospital. His care needs are constant and he needs round the clock support.
At Acorns, we are here to help Kavarli and his family live life to the full. We’re by his family’s side when his health declines and times are tough. We’re also there to give mum Samantha a break when she needs it. Samantha explains:
My nephew is four weeks younger than Kavarli and I was comparing their progress. When I saw my nephew sitting up, crawling, and doing all these things that Kavarli wasn’t, I started getting concerned. I took him to the GP who said that boys can be slower to develop and not to worry. But he got to six months, seven months, eight months, and he still wasn’t doing those things. So, we were referred to a genetics clinic. I was scared because ‘genetics’ meant something wasn’t right.
I remember the day we got his diagnosis – it was the saddest day of my life. They told us Kavarli had a condition called MECP2, and that children with the condition don’t live to see three years old. I cried up until his third birthday. Every time he went into hospital, I thought, ‘is it going to be now? Is this the time?
But we’ve made it this far, this year he’ll be 13. Kavarli has had 29 admissions to hospital now for respiratory infections. He’s a real fighter.
Caring for Kavarli is non-stop. It’s sorting out his tracheostomy throughout the day, having to check his gastrostomy is ok because if it’s not I can’t feed him. He’s also got an ileostomy that has to be checked often and changed.
We were introduced to Acorns through the community nurse as somewhere Kavarli could go if I need a break. I love Acorns, I love the people there. It’s like another mini family and I know that when Kavarli is there I don’t have to worry about leaving him.
He loves his time at Acorns. He likes the sensory room a lot and enjoys going into the spa. And he loves people, so he loves the attention.
For me Acorns is really supportive. Especially during those times in hospital when we thought we might lose him. You don’t want to cry because you start to think people are going to get sick of you crying, but never at Acorns. They’re brilliant. If there’s anything I need, or any questions I need answering, there’s always somebody there to help.
“It’s so comforting to know Acorns is there for me and my family. I don’t know what life would look like without them. If I’m being honest, it’s a struggle at lot of time. If I didn’t have Acorns, I’d struggle to cope.”
Hundreds of local babies, children and young people rely on Acorns Children’s Hospice for specialist 24-hour care and support. In turn, Acorns relies on people like you to fund the majority of our services. Your support with any charitable donation you can make is vital in helping us to continue the work that we do.
For more information or for interview, photograph or filming opportunities, contact the PR and Communications team at news@acorns.org.uk.
Notes to editors:
Due to the sensitive nature of Acorns care services it refrains from using the words ‘terminal’ or ‘terminally ill’ in its press releases and public communications when describing the children who use Acorns and the conditions that they have. Instead, Acorns uses the words ‘life limited’, ‘life limiting’, or ‘life threatening’. Acorns kindly requests that you respect this in your communications when referring to Acorns Children’s Hospice. Acorns children have a lot of living to do. Thank you.