Living with SMA – Paul and the Kelly family

Fifty-four-year-old chemist, Paul Kelly, lives in Sale, Cheshire, with his partner Helen, and their three sons – Michael, 12, and 11-year-old twins Thomas and Patrick. Patrick has spinal muscular atrophy Type 1 (SMA).


Paul talks about Patrick’s diagnosis, family life, and setting up a successful powerchair football team for young disabled children.

 

At three months old, we noticed that Patrick’s ability to suck was weakening, and he started to lose weight. At birth he was a pound heavier than his twin, Thomas, but by the time they reached five months old, Thomas was heavier.

Patrick was very floppy – he had never been able to roll or sit independently, so we took him to see a doctor and were referred to a paediatrician. Patrick was diagnosed with SMA when he was 11 months old.

When we received Patrick’s diagnosis, we felt a little numb at first. We tried to understand the implications, but just couldn’t visualise the future – it certainly wasn’t going to be as we had imagined. However, as time passes we realise how lucky we are. We have a great family, have done amazing things, and have enjoyed seeing our boys growing up together.

Patrick and his brothers are all extremely close. They share a love of sport, and while Michael and Thomas recognise that Patrick has reduced muscle strength, and that there are things he can’t do, to them he’s just a brother.

‘Fiercely independent’ is how I would describe Patrick. He has to rely on others for all his daily needs, but as he gets older, he wants to set more of the rules, and do as much as he can for himself. He asks when he needs help.

Patrick faces so many physical challenges that it is easy to overlook all the social and psychological challenges. He hates being patronised, and especially dislikes being singled out by well-meaning, but very misguided, complete strangers who sometimes say some very silly things. His biggest challenge is to be taken for just who he is.

There is never a typical day with three active boys in the house! School days mean everyone up at around 7am in order to get to work and school on time. The boys have activities most evenings of the week and then there’s homework of course! That’s all so ‘normal’, but then we also have a good number of hospital appointments, home visits from health professionals, lift engineers, support workers, and deliveries of equipment and supplies. That all takes a lot of planning, and that’s mainly done by Patrick’s mum. We see a lot of Patrick after bed time and through the night, as he calls to be rolled. At weekends, it’s normally football for all of the boys, but we do try and find some family time.

Besides football, Patrick loves drama, and is working through exams and winning prizes. I love supporting him with all the things he enjoys doing. He’s never short of words and has a great sense of humour, so just chatting with him is also a joy.

As a family, we all love football, and we wanted Patrick to have the same opportunity to play the sport like his brothers do. I approached the secretary of the local football club, and a few of us managed to get the powerchair football team off the ground.

Patrick inspired other young disabled people to get involved, and the powerchair club grew! Today there are three squads playing in national and regional league competitions, and the future is looking good.

Amongst his sporting achievements, Patrick has played powerchair football at the national ‘premiership’, he was the youngest player to take part in the National League, and also the youngest to score a goal! He’s played against some of the best in England, and dreams of being part of the England team at the World Cup. Given his youth and years of experience, I’d say it was a realistic dream.

There is a strong case for powerchair football to become a Paralympic sport and it may happen in time for 2022, so Patrick has a good chance of playing at the Olympics. We keep our fingers crossed, and he keeps training.

Maybe we’re lucky because Patrick is so positive and such a great character, but our lives are turning out to be pretty good.”

The charity is here to help. The friendly care and support staff in our London office are here to give you free information and emotional support. Our phones are staffed 8.30am to 6pm Monday to Friday. We look forward to hearing from you.

 

Keep in touch