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The Gillett family - Jasmine's story
Jasmine's Mum, Maria tells us about the care they receive at Charlton Farm.
"Jasmine was four months old when she had her first seizure, although we didn't know that's what it was at the time. We spent what felt like forever in hospital with Jasmine having test after test.
Our perfectly healthy baby was becoming weaker before our eyes, she developed Nystagmus, she lost all tone, could no longer hold her head up. Her 'seizure' became a weekly occurrence, and then onto daily, any skills she learnt were lost with the next seizure.
We were finally told just before Jasmine's first birthday that she had an undiagnosed neurodegenerative disorder. We had never felt so alone. We went for second, then third opinions, being told the same each time.
Luckily for us, Jasmine is a fighter who has proved everyone wrong & we celebrated her 10th birthday in December last year. Her diagnosis has not changed, just the time frame.
Her life is not easy, she lost her sight at 18 months, lost the ability to laugh, cannot walk, cannot sit unaided, has to be tube fed & has hundreds of seizures a month.
But we try not to focus on the bad, it's about grabbing the good stuff, her smile lights up the room, she knows who we are, responds & reacts to us, she loves music and the one word she can say is 'mama'.
We were lucky to be referred to Charlton Farm by our Lifetime nurse. We had somewhere to be a 'normal' family, to make friends with other families who understand, no explanations needed.
We can smile, laugh & enjoy life. To us Charlton Farm is about living, making memories.
Jasmine is allowed to sleep in our room with us as I still can't bear to be apart from her & I still look after her but I have help if I need it, someone to talk to who understands.
On a good day Jasmine can paint, we now have a lovely collection of her masterpieces, & she also enjoys the music therapy. On a bad day, there are always offers to take over with the cuddles Jasmine needs as much as she needs air.
Some of our favourite memories have been made at Charlton Farm, one of the being the first time Jasmine met Santa, she fell in love with his deep voice & his beard, she had everyone smiling & a few 'happy' tears were shed. Another, to hear her squealing as we cycled around the gardens on an adapted bike, she loved the wind through her hair.
So many other great memories have been made and we thank the hospice and everyone involved behind the scenes - volunteers and fundraisers for making each one possible.
We don't know how long we have, but at Charlton Farm we have the chance to live, thank you."
Maria wanted to share her story as a way to support Children's Hospice South West's 25th Anniversary.
Find out about our 25th Anniversary
At Children's Hospice South West (CHSW) we are absolutely committed to making the most of short and precious lives.
The care offered at each of our hospices is not simply about medical and nursing care for sick children, but about enriching the lives of children and their families.
Families talk about the 'treasure chest' of precious memories they build to carry into the future ... a future which will, sadly, be without their much loved child or children.
We help build precious memories for families whose children are living with life-limited or life-threatening conditions.
We provide a home from home environment where sick children and their families can come for a much needed break.
We offer information and training to professional staff on issues relating to palliative care and bereavement support.
Our hospice open days
Each month we open our doors to give our supporters an insight into children’s hospice life and thank our donors and volunteers for all their ongoing support.
We do not have any planned family stays at during these days and so you won’t hear the usual noise and laughter that bounces off the walls of the house but you will leave with a huge sense of enthusiasm for your local charity and a proud smile on your face.
"To be honest I really didn't know what to expect, but today has inspired me to do so much and not take my life for granted."
Book your tour today
Children’s Hospice South West now has a chain of children’s hospices covering Cornwall, Plymouth, Torbay, Devon, Somerset, North Somerset, Bristol, Bath and North East Somerset and South Gloucestershire.
Little Bridge House, which opened in 1995, is a beautiful stone built building in North Devon. It is a peaceful and relaxing environment.
Charlton Farm is nestled in magnificent parkland, just west of Bristol. It provides a secluded and beautiful setting.
Little Harbour is conveniently situated for families who live in Cornwall, Plymouth and parts of South Devon.
Find out more about our work