Zach is five years old and has Yunis Varon, a syndrome which affects his sight and hearing. His mum, Jemma, tells us how Sense’s virtual support has been a lifeline during the pandemic.
When my son Zach was diagnosed with Yunis Varon syndrome as a baby, we were told that it’s incredibly rare – so rare, in fact, that we think he’s the only person in the UK to have it.
His condition affects lots of different parts of his life. Zach’s blind and partially deaf, and has to be fed through a tube in his tummy. He also has sleep apnoea so has to be on a ventilator when he’s asleep.
Before I got involved with Sense, I’d taken Zach to lots of different baby groups, but he was always the odd one out. It was always so upsetting to see Zach not being included with the other children and not being able to play with them.
Feeling included at a Sense Family Centre
I found out about Sense through a health visitor, who encouraged us to go along to our local Sense Family Centre. We soon got introduced to Nicky, our Sense Children and Family Support Worker, who’s been absolutely amazing. She’s always there at the end of the phone to offer any advice and to help us find new ways to support Zach.
What are some of Zach’s favourite activities to get up to at the centre? He enjoys music sessions, playing with sensory toys and he absolutely loves swimming in the hydro pool.
It’s a great activity we can all take part in as a whole family – so that’s me, my husband, Zach and his little sister. It’s rare that we can all go swimming together as regular pools are too cold for Zach’s muscles, and I’m really grateful that Sense have given us the opportunity to have some much-needed fun as a family.
Sense’s virtual sessions made sure no child was left out of life during lockdown
Sense’s virtual support groups really were a lifeline during lockdown. Zach was extremely clinically vulnerable, so we had to shield in the house, and like a lot of people I struggled with feeling lonely.
It was nice having regular sessions that I knew Zach would enjoy and which gave me the chance to chat to other parents in similar situations. Nicky also sent us care packages, as well as sensory toys and instruments, which was really lovely and meant we had all the equipment to get involved in the sessions.
Zach loved getting involved in the musical parts of the virtual sessions. It was so nice to see him join in with some of the songs. His favourite nursey rhyme at the moment is Five Speckled Frogs – he always laughs at the frog noises.
Providing life changing children’s services
When schools went back in September, I was told that Zach wasn’t allowed to go back. Government guidelines kept changing, and the school said they couldn’t meet Zach’s needs.
I got in touch with Nicky to ask for advice, and she was extremely supportive. She let Zach carry on taking part in the virtual children’s sessions, giving him a bit of a routine, and she and her colleagues worked with Zach’s school to get him back into education
As well as the online sessions, Sense made so much effort to give Zach activities to do to make sure he didn’t get too behind at school.
I know that my family are really fortunate to have Sense supporters out there who really care about Zach, and that there were lots of children like Zach who were completely isolated over lockdown.. Thank you from the bottom of my heart to all the people who support Sense – you really are helping Sense provide life changing services.
Donate to the Sense summer appeal
Without your donations, children like Zach would have been left out of life over lockdown and wouldn’t have got the support they need.