The girls, along with mum Emily and dad Matthew, have been visiting Charlton Farm for 10 years and Emily says the stays there have offered the family some welcome respite from the daily challenges that life sometimes throws at them.
Lydia, aged 14, has
been diagnosed with Lennox-Gastaut Syndrome which is a severe form of epilepsy that typically becomes apparent during infancy or early childhood. This means Lydia experiences several different types of seizures, causing delays in reaching developmental milestones and impacts Lydia’s vison.
Despite her condition, Lydia enjoys music, spending time outdoors on the trampoline and outdoor play equipment, chilling in her bedroom with the care team and saying hello to the animals along the drive to the hospice.
The hospice not only cares for Lydia during stays but sister Annie too, aged 15.
Mum, Emily explains how the hospice’s support has had a positive impact on family life.
We go as a family to Charlton Farm, for respite. The team at Charlton Farm look after and entertain Lydia while we do things we can’t normally do.
"This could be anything from going for a walk, having a meal out, enjoying some chill time and spending time with our other daughter Annie. We love chilling in the lounge and garden at Charlton Farm, not forgetting the amazing food and cakes which they provide! When we visit the hospice, we love going for walks in the woods and visiting some of the local attractions, Tyntesfield, Noah’s Ark, Clevedon Pier and last time was walked to Portishead and back! It’s such a peaceful, relaxing place, it feels like it is in it's own little bubble!
CHSW also have a Sibling Team, which has been fantastic for Annie. She has met other siblings in a similar position as herself and has made many friends.
Since being supported by CHSW, mum Emily has used her love of running to help raise vital funds for the local charity too.
Emily tells us about her upcoming challenge at the 2024 Bath Half Marathon and how the generosity of others spurs her on to k
eep raising funds so the hospice can keep providing support to families like theirs.
“Bath Half Marathon is my local big race. I have completed the course about 5 times but not for a few years. I turned 50 during lockdown and completed it virtually but I knew that I wanted to run it again in person. I really enjoy training as running is my time; it keeps me sane and really helps my physical and mental health.
“I chose to run for CHSW this year as we have been visiting Charlton Farm for about 10 years. The hospice is a wonderful, calm, happy place, not at all what you would expect a hospice to be, and we just know they are always there for us in a time of need. I always feel so proud running in my CHSW vest.
“If you are thinking of running in any event for CHSW just go for it!
"You will be supporting an amazing charity who offer tremendous support. They always give a very warm welcome before and after the race at their stall in the event village. I especially enjoy indulging in one of their delicious homemade flapjacks post-race!
“If you are thinking of challenging yourself to a run, just go for it, you won’t regret it!"