Callum’s story

Est. read time: 2-3 minutes.

Callum Van-as lives with the neurodevelopmental condition CDKL5.

Characterized by uncontrollable seizures, low muscle tone and developmental challenges, it is something he has had since a baby – but it was only diagnosed when he was seven.

It means he has numerous seizures every day, ranging from ten seconds to four minutes. Callum, who is non-verbal, enjoys day care and short breaks at The Treehouse. He has also benefitted from music therapy.

“We’ve had so much help since moving here four year ago,” said Pat, who previously lived in Walthamstow.

“The Treehouse is a lovely place, especially compared to another hospice we used previously. It beats it by miles. Everyone is so helpful and friendly and there’s always someone on hand to give us advice, either in person or on the phone.

“Callum enjoys going to the hospice for an overnight stay. We think of them as a fun sleepover – something he doesn’t get the chance to do with family and friends. EACH is a special charity and one that helped us so much during lockdown, when life was particularly hard.

“Callum still had music therapy and attended lullaby nights via Zoom. It made such a difference and meant we still felt connected, rather than alone. Callum definitely benefitted and so did I.”

Pat, who also has three grown-up daughters and three grandsons, says she is grateful for the support her and husband Justin receive from EACH.

“Sometimes it’s tough. In fact, most of the time it’s tough,” said the 56-year-old, who has counselling at The Treehouse.

“However, Justin and I cope together and describe ourselves as a team. We get on with things and when one of us is struggling or feeling low, the other is always on hand to pick them up.

“Callum going to school is healthy for us all, because it gives us a routine and a purpose for getting dressed in the morning. Our lives have gone down a certain pathway but, as I always say, we’ve met so many kind and lovely people through Callum.

“That includes people from his school, from going to football and most definitely through EACH. Despite everything, he’s a happy boy. He’s got a lovely smile and he’s so affectionate. Everyone loves him.”

The family are avid football fans and have season tickets at West Ham United.

“Justin and I have been going to games for years and Callum loves watching the Hammers, too,” said Pat.

“He loves the atmosphere and it’s a case of the noisier the better. It’s a release for us all.”

Published in May 2023

Families’ stories and experiences are unique to them and we have been kindly granted permission to share this family’s story. If you have been affected by what you’ve read or have a question and would like to talk to someone, please contact your local children’s hospice service or Together for Short Lives, the UK charity that supports families caring for seriously ill children (tel: 0808 8088 100).

 

Would you like us to write and share your own family story?

We give all those receiving support from EACH the opportunity to share their family story. All family members are welcome to get involved if they’d like to and we will never share your story until you are completely happy with it. If you have any questions or are interested in finding out more, please contact Matt Plummer, EACH Media and PR Manager at matt.plummer@each.org.uk.

Despite everything, he’s a happy boy.

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