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 and 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.