Child’s Condition: Ataxic Cerebral Palsy and speech difficulties
Attended Heel & Toe Since: July 2012
Suffered an exterior fossa haematoma during birth
Receives: Conductive Ed
Balance has improved
Support Heel & Toe Children’s Charity
Within a couple of hours after Philips birth it became clear he wasn’t well, he was taken to a midwife, then a doctor, then admitted to the neo natal ward – the next time I saw him he was covered in wires & tubes, he was also on a ventilator. His health deteriorated quickly.
There were many doctors and tests the next day to try to discover what was wrong with Philip, eventually it was discovered he had suffered a significant bleed in his brain around the time of his birth. Philips health continued to deteriorate rapidly and time was running out at just 2 days old his parents prepared to turn off Philips life support as the doctors believed that would be ‘best’. A last minute decision to wait just 48-72 hours more was made instead, as those hours progressed there was little change until a nurse suggested giving him a cuddle & amazingly it became his ‘turning point’.
Thankfully he was well enough to have an MRI scan before being transferred to Newcastle for brain surgery at just 6 days old. His recovery was amazing and just 7 days after almost turning off his life support his parents knew Philip would be going home at just 12 days old. They were given no information on how Philips development would be affected, the doctors simply said they didn’t know, it was one of those things, one doctor told them he would never be an athlete.
Philip now has a diagnosis of 4 limb quadriplegic cerebral palsy, along with low muscle tone and a speech disorder this means that Philip struggles with his balance and coordination he is not able to stand or walk without a lot of help and support, he uses a kaye walker and quad sticks along with a wheelchair for longer distances, he wears splints to support his legs and a pressurised suit under his clothes. Philip struggles to do everyday tasks like eating and drinking, washing, dressing writing and playing with toys because his muscles are weak, his balance is poor his movements can be jerky and uncontrolled, his speech is difficult for strangers to understand yet he is a little boy who has a lot to say.
Philip has attended Heel and Toe for 4 years , he looks forward to the weekly sessions and the small specialised groups have given him the support and confidence to develop his quality and range of movements. There has been measureable progress made during Philips time at Heel and Toe and throughout the last 4 years this has been one service we can rely upon, while many others are cut or simply withdrawn we know that the conductive education sessions do make a difference to Philip, the conductors can explain simply how Philips cerebral palsy affects him and how their therapy sessions can make an improvement, often making it sound so obvious that you wonder why no doctor had told parents. Philip receives weekly sessions of therapy, this is more than the NHS currently provide despite his complex needs.
As a family they are grateful for the time Philip spends at his weekly session at Heel and Toe as this allows them time to spend with his older sister knowing he is well cared for in a safe environment while he thinks he is having fun but ‘we’ know he is really working hard.
Philip loves sport but most sports are not accessible for someone with a disability but Philip joined Middlesbrough Powerchair Football club in 2015, where he plays a fast exciting sport with children and adults of varying disabilities. This year he scored his first goal in a match and he was awarded the most improved player in his team. It is wonderful to watch him play an inclusive sport where he is encouraged and supported, Philip has now made many new friends.
Philip is a child with the biggest personality and a smile that can light up the room, he is funny and loves to be centre of attention but most of all he just wants to be like everyone else.