William is 14 years old and has Myotubular Myopathy and Scoliosis which is a rare muscle condition that causes severe muscle weakness and affects his ability to move and breathe on his own.
William has been supported by Charlton Farm for 12 years, and his mum Adele shares their story to help others understand children’s hospices and how essential these services are for families like theirs.
“In the last year or so, William’s strength has been deteriorating. Since his scoliosis is inoperable, his pain has accelerated and his skin breakdowns are never ending. I don't tell you this to feel sorry for William (he wouldn't want that), but to let you know that the doctors and nurses at Charlton Farm have been amazing. The team have not only been a constant support in getting his pain medication under control but a listening ear any time we need one, given respite on our visits and have helped us create everlasting memories."
From Santa arriving by helicopter, a visit from Fireman Sam’s fire engine and getting to meet Andrew Lincoln who plays Rick Grimes in The Walking Dead, the hospice has been the location of some very special moments and memories which Adele says “will stay with us forever.”
When we visit Charlton Farm, we enjoy time being William’s parents and not just his carers.
As William gets older, he has become more aware of his life expectancy and has begun asking his family questions; something no parent ever imagines having to answer.
Adele shares how having a child with a life-limiting condition means having to have some very difficult conversations.
“We never wanted to have these conversations with him, but the specialist teams at Charlton Farm have supported and guided us through it. They have also helped us to communicate with William's little brother, James about what life-limiting means.”
We couldn’t have had these conversations without the help, advice, and support of the exceptional staff there.
"I’ll be forever grateful for their support in answering our questions, as well as William’s and James’.”
As the family prepares William’s advanced care plan, they have seen a transition from him being a little boy who didn’t talk about his feelings to now discussing what he hopes to do before he dies. The family refer to this as William ‘living his best life’.
One of William’s wishes is to visit Disneyland and in June, his family will prepare to make his dream a reality.
The team at Charlton Farm has played a vital role in helping organise the trip to ensure William’s medical needs are met. For example, the doctors have liaised directly with the medical teams at Disneyland to inform them of William’s condition and ensure that the appropriate care and support will be in place throughout the visit.
Adele explains,
Our trip simply wouldn’t be possible without the incredible support of the team at Charlton Farm.
Adele recently took on CHSW’s 300,000 Steps in March challenge to help raise vital funds for the charity which supports so many families like theirs.
Adele shares why she took on the challenge and how important the hospice’s support is for her family: “With our busy life, sometimes not being able to leave the house, completing 10,000 steps per day has been a challenge but those who know us, know the support that the staff at Charlton Farm have given us over the years and how much this place means to us.”
In addition to taking on the challenge, Adele has also been sharing regular updates on her Facebook page. These updates were not only about reaching her step goals, but also to raise awareness about life with a child who has a life-limiting condition, what a typical day looks like for William, and the vital role children’s hospices play.
“I felt incredibly lucky to finish my walking challenge on the grounds of Charlton Farm, where I was warmly welcomed by my babies who made me a lovely banner."
Completing my challenge here at the hospice has been a perfect end to my challenge.
“We’ve taken on several challenges for CHSW, and they have always been incredibly grateful and supportive of every effort. If you’re thinking about doing a challenge to raise money for the hospice, just go for it. Hopefully, you’ll never need to use a children’s hospice, but so many families like ours do."
I honestly don’t know where we would be without them.