Karen Tilley from Westbury has signed up to take part in Santas on the Run – goes freestyle to support the hospice that cares for her teenage daughter, Josselin.
The virtual festive run is raising money for Children’s Hospice South West’s (CHSW) Charlton Farm hospice located in North Somerset. Karen was one of the first families to use the hospice for respite breaks over 12 years ago.
Karen said: “I was nervous about going to the hospice and expected it to be like a hospital. It was actually very homely and friendly; my son loved the soft playroom and the jacuzzi. On our first stay it seemed strange letting somebody else take over Josselin’s care and I followed her around the whole time but I soon gained confidence with the care team and was able to relax with my son.”
Because it’s been such a rubbish year, we wanted to end on a high and do something worthwhile, so we are taking part in Santas on the Run – goes freestyle!
Josselin has CHARGE syndrome, is profoundly deaf, has breathing difficulties and severe visual impairments. She has endured over 30 operations in her 14 years.
Karen said the family has many cherished memories of Charlton Farm: “Seeing Josselin so happy going swimming, riding on adapted bikes, horse riding in the garden. She knows her way around the building and will always find the big toy box and sit inside it, even now that she is a big 14-year-old! Charlton Farm has been a big part of Josselin’s childhood and it is the only chance I get to relax and do absolutely nothing for a couple of days - I don't even have to cook!”
Lockdown has been tough on Josselin. Her sensory impairments mean she cannot access any online services, she can’t do things that other children might do to keep them busy such as arts & crafts, cooking and watching TV.
Karen said: “Because it’s been such a rubbish year, we wanted to end on a high and do something worthwhile, so we are taking part in Santas on the Run – goes freestyle! I will be pushing Josselin in the all-terrain buggy whilst dressed in something festive and my boys will be running with me. We’d like to raise some money for Charlton Farm and the good work they do.”
It’s free to sign up and take part in Santas on the Run – goes freestyle; you can choose your own distance, route and festive fancy dress, and individuals who raise £15 or more will receive a special medal. Register your interest and be part of a very important weekend of fundraising during 11-13 December.
Santa's on the Run - goes freestyle is kindly supported by Whirlwind Sports.