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Jessie’s Story…
Eleven-year-old Jessie suffers from a rare and catastrophic form of intractable epilepsy.
When she was 10 months old, Jessie had a febrile convulsion and ended up in hospital. Two weeks later the same thing happened and 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 Ripley 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 were told their daughter had Dravet Syndrome.
Her condition means Jessie has learning difficulties and finds it hard to socialise with other children. She is autistic and has a gastronomy tube, which she has nicknamed Beryl, to feed her. Before she was tube fed, Jessie’s seizures robbed her of her appetite until she was admitted to hospital with organ failure due to her being medically anorexic.
“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.She can’t go outside because it is too stimulating for her. She gets over excited and with the temperature change, these are all triggers for a seizure. I feel guilt all the time as she misses out on so much. It is so sad knowing that your child can’t play outside. 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.”
Fans of former X-Factor winner Sam Bailey have raised more than £10,000 for Rainbows, by donating at her shows.
Earlier this year, Sam announced Rainbows as the charity partner for her 2017 ‘Sing My Heart Out’ tour, and at each of the 32 UK performances there was a collection for the hospice which cares for children and young people with life-limited illnesses.
In July, Sam visited the hospice to meet children, young people and staff and also to present her donation.
She said: “I’m so pleased that I have been able to raise £10,300 for Rainbows, the work they do there is just outstanding and every time I visit I feel so proud to be a Patron for them. I had such an amazing time on tour and raising much needed funds for such a deserving charity has been the icing on the cake for me.”
