Jon lives in Chippenham, Wiltshire with his wife Nicki and their three children. Last year Jon decided to take part in a 3-day cycling challenge, Ride for Precious Lives, in support of Children’s Hospice South West (CHSW) as his daughter, Ellen, is cared for by the charity and the whole family have short breaks at its Charlton Farm hospice near Bristol.
“My family and I have been lucky enough to be able to use Charlton Farm for some respite in looking after Ellen over the last few years – which is why I have chosen to take part in Ride for Precious Lives. I would like to give something back in return for the wonderful care she has received there. I am also very aware of the pressures on CHSW to provide more access to other families that need to use the hospices and I know for that to happen, funds must be raised on a continual basis.
“It is difficult to convey sometimes what we mean by ‘precious lives’ – of course all our children’s lives are precious, but for children using the hospice this means something more. Everyone who use the hospices will have a different perspective on this, so I can say only talk about what that means to my family, right in this moment. We know that Ellen’s life will be limited in years, but we are determined that it will not be limited in her enjoyment of life as far as we can help it – and this is exactly the approach that CHSW take – making the most of precious lives.
Getting access to Charlton Farm was a revelation for us – finally we had a place where we could pass on the care for Ellen to someone else for a day or a few days at a time, we could get some decent sleep and we knew that she would be medically safe, but just as important we knew she would be happy. When we arrive at Charlton Farm, Ellen knows where she is, she looks excited, and we know she will be doing lots of the activities that she likes doing – music, hydrotherapy, reading stories and using the sensory room.
“At 9 days old Ellen suffered a severe brain haemorrhage. A diagnosis of quadriplegic cerebral palsy was given to us a few weeks later. We were told that Ellen would never be able to talk, would be blind, and that her level of comprehension was difficult to predict. After a few months we were allowed to take Ellen home, which after the intensive care environment in hospital, felt like stepping into a black hole.
“That first year was particularly difficult for us, not just in dealing with Ellen’s symptoms, the numerous operations and tests, but also in getting any professional support. We learned the hard way how to access services but were repeatedly told that respite care wasn’t available for children so young. The crunch point came after we had spent 4 months in hospital when she was four years old - Ellen caught an infection and ended up with meningitis. We had a very difficult 4 months in and out of intensive care, caring for Ellen at the hospital in shifts, whilst trying to keep life normal for our two boys aged 6 and 4 months at the time. Exhausted, and in desperate need of rest, the medical team at the hospital introduced us to Charlton Farm.
“Because of the damage to Ellen’s brain, she will not sleep without sedatives every night, with repeat doses usually needed in the middle of the night. It’s amazing how lack of sleep changes you as a person, and although my wife and I are now used to the routine, the broken sleep wears you down quite quickly, and affects your work, your relationships, and the quality of time you can spend with your other children.
“Getting access to Charlton Farm was a revelation for us – finally we had a place where we could pass on the care for Ellen to someone else for a day or a few days at a time, we could get some decent sleep and we knew that she would be medically safe, but just as important we knew she would be happy. When we arrive at Charlton Farm, Ellen knows where she is, she looks excited, and we know she will be doing lots of the activities that she likes doing – music, hydrotherapy, reading stories and using the sensory room.
“When Ellen stays at Charlton Farm, this also allows us to do things as a family that we would not otherwise be able to do – like go camping, go walking in the mountains, go cycling even! Our two boys, one aged 13 and the other 7, are growing up fast and we don’t want them to miss out on experiences we can have together as a family.
“I would say to those people who take part in Ride for Precious Lives, you are amazing and your efforts to raise money for CHSW will hopefully allow more families to benefit in the way my family has.”
Ride for Precious Lives is a 3-day 205-mile cycle from St Austell to Bristol, across three counties and calling in at the charity’s three hospices in Cornwall, North Devon and North Somerset.
This summer’s Ride for Precious Lives takes place from Friday, July 12 to Sunday, July 14.