“My son Euan is 5 years old. He has a rare genetic condition called Houge-Janssens Syndrome, and he has an amazing 11 year old sister, Lillian. Euan’s syndrome means he has low muscle tone, he is non verbal and he has a learning disability.
Euan is generally happy, although he does get overwhelmed when out and about when it is too loud or busy. Sometimes it can be as if a switch has been flicked. Last week I was on a bus with him and he was squealing happily about the adventure. Then the bus suddenly filled up and he screamed until we got off. It’s so difficult to manage him in public when he struggles like this. We love the Butterfly sessions at Gympanzees because they give him the space to enjoy the equipment without being overwhelmed.
We first heard about Gympanzees when they launched the Lending Library during the first few months of lockdown. Normal life with a disabled 1 year old is isolating enough because you can’t access playgrounds and playgroups in the same way that I could with Lillian, but lockdown exacerbated this isolation. He’d been having regular therapy appointments and they just stopped. His physio appointments were reduced to emailing photos and videos, until they sorted the technology to do video appointments. So loaning a box of sensory toys from Gympanzees that excited Euan and inspired him to roll or use his arms, was simply magical. Like Christmas had come early!
I remember an early favourite Lending Library item was the supportive rocking horse. He couldn’t sit on his own reliably yet, but with the support of the seat he could make it rock for short periods with ‘Horsey horsey don’t you stop’ playing! It helped develop his core strength, which contributed to him being able to sit independently.
When he was 2 years old and not yet mobile, we loaned a Firefly Scooot – a floor level wheelchair designed for toddlers. Straight away Euan put his hands on the big wheels and moved himself forwards for the first time ever! It was so exciting. After we returned it we managed to buy a 2nd hand Scooot and over the next year he developed his self propelling skills until he could turn 360 degrees in our hallway. Fast forward to when he was 4 years old and wheelchair services were assessing him for a proper wheelchair. The occupational therapist was astonished at his skills which were apparent within the first few minutes of sitting in a lightweight children’s wheelchair! He now whizzes around everywhere in his bright, green chair with monkey wheels.
Without Gympanzee’s Scooot he wouldn’t have had the chance to show us he could do it and he wouldn’t have gained that early mobility.
Through this, he realised the benefits of moving and started to bottom shuffle.
We’ve been to every Pop Up since they started back up post covid and both children have always loved it. Euan does physio without realising because he’s having so much fun on the trampoline or the swing or standing with support against the sandpit. When Euan lies on the trampoline and Lillian jumps around him, they are both filled with so much joy and Euan’s laughter fills the hall. Lillian and Euan have always had a wonderful bond, but at home they often play separately, whereas Gympanzees gives them the opportunity to play together and truly strengthen that bond.
At the last few Pop Ups Euan has used the Innowalk – a walking machine for people who cannot walk independently, which has countless benefits. Twice this summer Euan “walked” 2.5km in the Innowalk, which is incredible. During one of these sessions Lillian was on the rowing machine at the same time and by coincidence she was doing similar distances, although in bursts of energy. Every time Lillian stopped for a rest, Euan would overtake her on the Innowalk and then she’d race to catch up. I never thought he’d be able to overtake Lillian in a race and it made my heart sing!
I’d like to take this opportunity to say a HUGE thank you to Gympanzees for brightening up the past 4 years, aiding Euan’s development and bringing so much joy to all our family.
It would mean the world to us to have Gympanzees open all year round. Having that inclusive space where he can access specialist equipment and be in an environment which doesn’t overwhelm him, so he can learn and develop, would be incredible.
Inspired by Euan, Lillian is interested in a career with disabled children, so I’m sure she’ll be keen to volunteer when she’s old enough! If you’ll have her!”
Gympanzees:
We hope you enjoyed Jen’s blog as much as we did! Thank you for sharing your story, Jen! And we would be delighted to invite Lillian to volunteer to gain working experience!
The Gympanzees Centre will host 200,000 visits from disabled children, young people and their families every year. Our new home will be open 364 days, 7 days a week and will provide endless opportunities for health, happiness and support. We have already fundraised to secure a building and, now we need to raise £8 million to make the necessary renovations to open a purpose-built facility by June 2026.
