Marvellous medicine
Roald Dahl charity’s nurses help brave Chelsey live a fuller life with epilepsy
KERRY Grassick refers to the scars on her daughter Chelsey’s face as her “war wounds”.
Nine-year-old Chelsey suffers regular injuries during seizures she has as a result of a particularly serious form of epilepsy.
Kerry said: “She has smashed her head open and has multiple scars on the sides of her eyes from catching her face on corners of furniture.
“It’s very stressful, worrying about how she could get hurt.”
Chelsey had her first major seizure when she was three.
Kerry recalled: “It was very frightening. I had no idea what was happening to my child.”
Chelsey has a form of epilepsy known as Doose syndrome, which can be resistant to medication and is difficult to treat.
With no warning, she will drop to the ground and her body convulses, shaking uncontrollably.
Over the years, her condition has become progressively worse and it has held back Chelsey’s development.
Her speech has been badly affected, partially due to damaging her front teeth during a seizure.
She used to be accomplished in literary skills but now has difficulty in writing, reading and drawing.
She is unsteady on her feet and her memory is poor.
Kerry, a single mum from Mintlaw, Aberdeenshire, leads a life restricted by her daughter’s condition.
She said: “I’m paranoid to leave the village in case the school calls and says she has had a seizure.
“I don’t like leaving her. I’m cautious about who she is with and for how long. Even if she is upstairs playing, I am up and down checking on her.”
But thanks to Roald Dahl’s Marvellous Children’s Charity, Kerry and Chelsey don’t have to face the illness on their own.
The charity have created 58 children’s nurses and healthcare professional posts around the UK to help more than 12,000 seriously ill children and their families.
Writer Roald Dahl’s life was also affected by serious illness, tragedy and loss. It was his personal experience of illness – his own and that of close family – that spurred him on to help seriously ill children and their families.
Ten per cent of the revenue from the late author’s work goes to the charity.
Chelsey was assigned Roald Dahl nurse Jo Campbell, who has proved an invaluable support.
Kerry said: “If Chelsey is having a bad day and I am upset, Jo is there on the other end of the phone. She quite often pops in on her way home from work just to see how things are going. She has been a huge support to me and Chelsey.
“She stops me feeling alone and it makes all the difference to us.”
Jo can adapt Chelsey’s medication and has advised staff at her school on how to deal with her condition.
Working out of Royal Aberdeen Children’s Hospital, she is one of two epilepsy specialist nurses covering Grampian, Orkney and Shetland.
Jo manages a case load of 415 young people and has been in the post for 14 years, developing the service from its inception.
The charity help children who are affected by serious illnesses, including severe epilepsy, sickle cell anaemia and haemophilia. They can advise on a whole range of medical, emotional and social issues and Jo will be put in touch with families as soon as a child is diagnosed.
Over the years, Jo has grown close to Kerry and Chelsey. They recently travelled together to Clarence House in London to take tea with Camilla, Duchess of Cornwall, who is a patron of the charity.
Jo said: “Kerry and Chelsey have an incredible loving bond and they are a pleasure to deal with.
“For Kerry, the pressure is 24/7 and I am there to do everything I can to help families cope.
“We try to take away any stress we can. It’s an amazing job and it’s a privilege to work with parents and children like Chelsey.” ● To support their work, go to www.roalddahl.com/charity
If Chelsey is having a bad day and I am upset, Jo is there on the other end of the phone