The Arsenal Foundation has helped to fund KEEN London, a charity that runs activities for children with special needs and disabilities in locations across the capital. David Rose, 44 and from London, tells us how it has helped his son Alex.
“I’m a journalist for _The Times_ and my partner Jessica is a charity worker. We have two children Alex, six, and Ella, four. Alex has a rare genetic condition linked to an abnormality on chromosome 11 – he is one of thousands of children living with an undiagnosed condition and he is many ways unique.
“He was small as a baby and didn’t hit his milestones like other kids. We were told he might catch up, but by two he was still not able to walk like other toddlers, and was not talking – or even babbling as babies do. Despite this, he was able to access some excellent early help and physiotherapy, which helped him start walking with assistance, and then on his own.
“We went for genetic tests, which confirmed that Alex is not like other kids – he has a ‘duplication’ or extra material on part of chromosome 11, one of the 23 pairs that all of us have. Our first-born son was always special to us, but now the doctors said he was definitely special when they couldn’t find another mutation like his in all their medical records.
“A few months’ later Alex was diagnosed with leukaemia, which came as a further shock. We were sent straight to Great Ormond Street hospital and spent many months receiving amazing treatment from the NHS. It was a tough and awful experience – at one point we rushed to hospital on Christmas Day – but he finished two years of chemotherapy in November and is now back to school and enjoying life.
“It’s hard for us as parents to have never heard Alex speak, even to say “Mummy” or “Daddy” or tell us how he’s feeling, but he finds his own ways to communicate. He has special software on an iPad which can be his “voice” or he uses picture cards or pointing to let us know what he wants.
“He also can’t run, jump or play sport in the way other kids can, and it can be hard for him to play or interact with his friends. The medical treatment he’s been through has also been gruelling, involving lots of planned and unplanned hospital visits. However, generally he is a very contented kid with his own mischievous sense of humour and a very cute smile!
“For kids like Alex, it can be difficult to find sports and activities that they can easily access or feel safe and included in. By contrast, his younger sister had all sorts of options, and was playing tennis and football in the park as soon as we could find local clubs for her.
“I was researching ways that Alex might play or get involved in sport, and the council website had some information about KEEN. We called them up and they put him on the waiting list. We didn’t have long to wait before Alex was accepted in our local group. The sessions have been very important for Alex’s physical and social development.
“They are set in a warm and welcoming space, usually in a well-designed school setting that caters to a range of abilities and ages, and has opportunities for indoor and outdoor play.
“The sessions are structured so that every child has one to one support from a friendly and sensitive adult volunteer and there is a familiar routine. That’s fun for the kids and also reassuring for us as parents, because someone like Alex needs support or encouragement to boost their confidence and skills. Providing such dedicated support sounds simple but it is not a given, when even the simplest of activities can be difficult or off-putting if you have special needs or a disability.
“Activities include ball games such as football, basketball, ‘grandmothers’ footsteps’ and the like. But Alex has also been supported to help climb stairs and obstacles and play with puppets, which he really enjoys. There is also a tent, sensory and interactive toys, and every session ends with the Hokey Cokey and a giant parachute on which the kids are spun around. There is a great mix of familiar faces and games and opportunities to try new things with the brilliant volunteers each week. He loves it.
“After the first couple of sessions Alex felt very confident and supported to attend and I was able to leave him for an hour or two, which is amazing. As well as being great for Alex it provides some respite for us as carers. Now, as soon as we arrive he waves me goodbye to join the session – it shows his confidence and independence and how happy he is to join in and have fun.
“Every summer there is also a party open to all KEEN families from the groups across London including siblings.
“It really is a wonderful thing, and amazing that it is free. Kids can access these weekly sessions for up to two years at a time. To see Alex beaming with joy and excitement at the sessions is priceless for us as a family.
“While there is a lot of uncertainty about Alex’s future we’re pleased to see him making progress and I hope that soon he will be able to participate and enjoy sports more fully. It is great to see improvements in his movement, coordination and balance. His communication is also coming on.
“With some support he has scored a first ‘goal’ at KEEN sessions – kicking a football through a hula hoop for the first time. I hope he will continue to practice and develop those skills!
It is great to see Arsenal supporting a charity like KEEN – I know the club does a lot for the community and we are looking forward to accessing and attending events when Alex gets a bit older.”
KEEN London relies on volunteers to support children like Alex – no experience needed. all training provided. Visit [keenlondon.org](https://www.keenlondon.org/) for more information.
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