Real Life Stories

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Henry

Henry is 6 1/2 years old and has been coming to Pace since he was 6 months old. He seems to enjoy coming to school so much and especially loves his teachers.

He has cerebral palsy which affects both of his arms and legs, his trunk control and his ability to talk but through school, he is learning to use a powered wheelchair with a head-switch and communicates with the use of a pod-book and eye-gaze technology on a computer.

He lives with his Mum and Dad and two older brothers, who he adores.

His favourite things are tractors and he loves to ride his trike. He also likes to play football with his brothers (with help from Mum and Dad). He loves being outside, doing what boys do and going for walks in his buggy.

He really enjoys swimming and loves splashing in the bath at bath time. He is also able to go horse riding every Friday with school. So as you can see, he is a very busy and happy boy!!

Cerys

Cerys is 3 years old and has been attending PIPs at Pace for the past 2 years. When she started she was only able to lie on her back and move her arms and legs a bit, her hands were tightened into little fists and she found it hard to coordinate her body with her vision and hearing. Sadly she had sustained severe brain damage following a collapse after birth, a traumatic and life-changing event, not only for her, but also for her parents, wider family and friends.

For the past 2 years Pace has played a strong and consistent part in her and her family's life. She attends weekly 1:1 therapy sessions and also had the opportunity to experience a term of hydrotherapy. She has learned to do a lot of things with her body since starting at Pace – her hands are now relaxed and open, she can roll and push herself up when lying on her stomach. She likes to touch things and is working hard on learning to sit independently (her next big goal). She even managed to learn to swim with the help of a neck float, being ‘free’ and moving independently in the water is very relaxing for her.

The amazing therapy team at Pace have made all this possible. It’s a great organisation that gives so much to so many children and their parents.

Laura

Laura has cerebral palsy. Since the start of the new term Laura is in Oak group, the KS3 group of Pace. It takes a lot of effort for Laura to make her arms and legs move when she wants them to and her balance is a bit wobbly. Things like holding a knife and fork can be almost as tricky as putting her socks on.

At Pace, Laura learns how to get along and do things for herself. She does it with patience, determination and a cheeky grin. Laura can now get around the house with her walker and even manages a stroll around the block.

Alex

Alex was born with a rare genetic Mitochondrial disorder. He needs help with all daily living functions. He’s profoundly deaf and wheelchair bound. Despite his very complex needs, with the amazing help and support of Pace since Alex was 13 months old, we as a family (and most importantly, Alex) have learnt how to cope with and even excel at living, with this life limiting condition.

At 2 years old we were advised that Alex would probably not live past six. He’s now nine, which has amazed all his specialists and baffled the experts at Great Ormond Steet (GOSH). It has even been suggested by one of his specialists at GOSH that it is down to the total commitment, care and constant stimulation that Pace gives to him during his schooling. They gave us hope and confidence to move forward with Alex and help him to achieve things that no one thought possible.  He now drives his powered wheelchair with his foot, signs with his feet and turns his pedals on his specially adapted trike.  He’s been waterskiing, snow skiing, surfing and can even take my credit card out of my purse to give to one of his carers to pay for DVDs from Amazon!!! He does not let anyone ignore him and he’s achieved so much in his short life.

He’s really cheeky and he has an amazing sense of humour.  We don’t know what the future holds for Alex but everyone who meets him falls in love with him.