Kavarli is a social butterfly. He loves to be around people, spreading smiles and stealing hearts wherever he goes.
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.”
“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.”
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