Lucy McNabb

“When I was asked to write this, I said yes straight away. I’m more than happy to tell you all about what Rainbows means to our family.

We have two lovely children; Alex, a very typical, intelligent, laid-back 12 year-old boy and Lucy, a beautiful, funny, 11 year-old who has Dravet’s syndrome. I say Alex is a typical boy but his childhood has been quite different to that of his peers. It’s been full of disappointments, traumas and dramas – and he’s had to take second place from a very young age.

Dravet’s syndrome is a very rare, severe, life threatening seizure disorder which causes brain damage and therefore learning difficulties. Lucy functions as though she were two years old, which in the body of an 11 year old creates its own problems! When Lucy had her first seizure at nine months old, our priorities changed forever. She has on average three major seizures a week and several smaller ones. But it’s the major ones that threaten her life each time.

Usually they stop after two to three minutes, otherwise we administer rescue meds. If this fails, it’s a 999 situation. We’ve been to the resus unit at the Leicester Royal Infirmary many times. And once in Intensive Care, we watched her stop breathing and saw the life support machine switched on.

Every seizure could be her last. The relief when they stop, when she starts to breathe again, never goes away.

So you can imagine, if we were going to leave Lucy overnight anywhere, or with anyone, it would have to be with people we totally trust. We’ve found these people at the Rainbows Hospice. Lucy’s been going to Rainbows for nearly a year now, she’s made many friends, and won the hearts of everyone.

At home, at night, we watch Lucy on CCTV, she has a seizure alarm under the mattress and seizure pillow to help avoid suffocation. At Rainbows, the team provides constant supervision, nursing support, on-call doctors and the most dedicated carers we could wish for, 24 hours every day.

Rainbows also support the siblings of the children in their care, arranging outings and events. Alex has already been to Alton Towers, Butlins, helped produce a radio show and composed a piece of music with a professional musician.

Every aspect of family life, every family member is catered for. While Lucy’s at Rainbows, we get a taste of what life should have been like, the life we imagined when we decided to start a family. In the knowledge that Lucy’s safe and happy, myself, Colum and Alex are able to do whatever we choose. We’ve been camping in North Wales, we’ve seen Take That at Wembley Stadium. But we don’t need to go away. When Lucy’s at Rainbows, I can lie in the bath until the water goes cold, read a book, spend a whole night next to my husband. We can chill out in the garden, lounge around the house, go for a bike ride, in fact, pretty much whatever we feel like! Spontaneity is a luxury we don’t experience very often.

Lucy takes some getting used to. She has many different types of seizures and many triggers; temperature, light, her emotions. Sometimes there are no obvious triggers; they just happen out of the blue. But we have confidence in Rainbows. It provides a calm, happy environment for Lucy, there are lots of toys to play with and things to do. And adults to play with when she’s well, who will comfort her and keep her safe when she’s not.

Finally, the part we try not to dwell on – if Lucy dies. We don’t know when it’ll happen, or how, but it will probably be a prolonged seizure which will prove to be too much for her body to cope with. What we do know is that Rainbows will be there to support all of our family, emotionally and practically, for as long as we need them.

Thank you for reading this.

Vicky, Lucy’s mummy.