“It breaks my heart to watch my daughter growing, unable to do the things other children do.”
Jessie, from Derby, suffers from a rare and catastrophic form of intractable epilepsy and factors such as the weather and over stimulation can cause life-threatening seizures.
When she was 10 months old, Jessie had a febrile convulsion and ended up in hospital. Two weeks later the same thing happened and mum, Rachel, was told not to worry. But after three agonising hours, the family’s world started to crumble as Jessie was taken to Intensive Care and put on a life support machine where she spent a couple of days.
Jessie pulled through but once back at her Derbyshire home, the seizures continued and became more frequent. For the next two years, she was constantly in and out of hospital and at least once a week she was blue lighted there in an ambulance.
Finally, when she was two-years-old, Rachel and Daniel, Jessie’s father, were told their daughter had Dravet Syndrome.
Jessie also has autism and her condition means she has learning difficulties and finds it hard to socialise with other children. Jessie’s seizures robbed her of her appetite until she was admitted to hospital with organ failure due to her being medically anorexic. She now has a gastrostomy tube, which she has nicknamed Beryl, to feed her.
“Jessie can never be left on her own, you even have to go to the toilet with her,” said Rachel. “She sleeps in our room as the risk of seizures at night is even higher. She is attached to me 24/7. I feel guilty all the time as she misses out on so much. When you wake up in the morning, you never know what you are going to get.
“You do worry about everything; the next seizure could kill her. We dread winter, if she gets a cold, it can put her on life support.
“Despite everything, Jessie is so positive, she doesn’t know any different and she is so happy and is always smiling. There are some days when I could cry at the drop of a hat but she brings us joy every day.”
In January 2014, Rachel and Daniel, who also have a son, Tom, discovered Rainbows. “Rainbows is amazing,” said Rachel. “With having Tom too, he really needs us and we can’t do normal things with him as we are so consumed by Jessie. Rainbows gives us that time.
“Trusting someone with Jessie is a big thing for me. At Rainbows, I know Jessie is safe. It isn’t just about the care Jessie receives, Rainbows is also a support network for the whole family.”
You do worry about everything; the next seizure could kill her. We dread winter, if she gets a cold, it can put her on life support.