Elaine Toombs
My Story: A parents perspective

My daughter Samm first began sleeping more at the age of 14. Whilst most other girls her age were eager to be out round at friends houses and wanting to socialise, Samm was in bed by 9pm every night. At the time I just thought I was lucky to have such a good girl and didn’t for one minute associate it with the onset of a sleep disorder. However, by the time she reached her late teens the symptoms had increased. Samm was frequently tired and started to experience vivid, often disturbing nightmares and suffered regular cataplexy attacks. We spent several years desperately seeking medical help and I grew increasingly frustrated and concerned that we couldn’t find the reason for why she was always so tired. Watching your daughter suffer sudden attacks of muscle weakness, causing her to fall, crashing to the floor in what would appear to be an unconscious state, is petrifying. As a mother you want to be able to cure your child and I was convinced that she may be suffering from a brain tumour or a neurological condition like MS or MND.

After she made numerous visits to the doctor I finally lost it and went with Samm to demand he do something to help. Luckily the doctor was very sympathetic and noticed our concerns and went through all her previous test results and medical notes. Having had some very brief experience of narcolepsy in his training, he suggested this could be the possible cause and further neurological assessments have confirmed the diagnosis.

Finally having a name to put to the problem, a valid reason for Samm’s symptoms was such a massive relief to the whole family. From that point onwards together we’ve learnt to live with narcolepsy and adjusted our lives as best we can. Samm has tried various medications some of which have been more successful than others in relieving her symptoms; however, she is currently not taking any drugs.

Sam is an incredibly bright girl and despite having narcolepsy has gone on to pass GCSE’s, A-levels and gain a degree, and is currently studying for a Masters in Criminology at Sheffield University. However, she still endures extreme fatigue and regular cataplexy attacks which become more frequent in times of stress. She had to learn to go out unaccompanied all over again and overcome her fear of being on her own and all the problems that might bring. Her condition means she is unable to drive a car which creates further issues, and I worry about how she would ever cope having children in the future.

My mobile phone is always on and my work colleagues are fully aware that if needs be I will drop everything to be with my daughter. It’s a mother’s instinct to want to wrap up your children in cotton wool and this is intensified when your child has a medical condition. But, Samm is the one who has to live the rest of her life and whilst I’ll always want to protect her, I’ve had to take a step back and let her grow as a person in her own right. Looking at that person now I am extremely proud.