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 and 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 and 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.
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."