The Daily Mail Article
Ever since Mathilda developed narcolepsy back in 2010 we have been approached by journalists for our story. In the early days Oliver and I declined interviews because we didn't have it in us. It wasn't that it was some kind of secret, just that when you have a child that has spiraled into poor health, there's really no room for anything else. I was advised by kind friends to "take a day at a time." Back then it was more like an hour at time. I remember feeling good about getting a meal on the table, not stressing over Liberty and Elliot's schoolwork and hiding my tears whilst hovering the lounge. All our efforts were concentrated on getting through the day caring for her, before thenight shift began.
Five years on Mathilda still refuses to be filmed but is comfortable with her story in writing. So with that in mind I accepted an interview with John Naish from the Daily Mail in London.
Mathilda's journey is unique in that she was three years old when it all began, and that in order to secure her future, we moved our family to the USA. But it is not unique in that we had a hard time being heard by doctors, and hit a brick wall when when it came to treatment. The medication and specialist care she needed was not available to us in England. It should have been. And whilst some children back home have managed to secure the right medications through pediatric specialists, many have not. Without Xyrem (the night time drug), life for little narcoleptics is very hard, and for the parents it is very hard. Their education, character formation and ability to interact socially is threatened to an extent that leaves many housebound, withdrawn and depressed. In short their childhood is at risk.
Mathilda has responded well to treatment under Prof. Mignot at Stanford Center for Narcolepsy Research in California. She goes to school, gets her homework done and makes jokes without falling to the floor. She can write, skip and has just started the piano. But like many children battling a chronic illness, she is propped up on drugs and dependent on carers. With narcolepsy, that means medications through the night as well as morning stimulants and daytime naps. She has a little bed area in the back of the classroom, a pillow pet whenever we leave the house and a schedule that resembles the toddler years. To a large extent, she is leading a near normal lifeand for that I am more grateful than I can put into words.
My hope in the Daily Mail articles printed 10th April 2015 lies in the awareness of narcolepsy being heightened so that treatment becomes available to all those who have yet to secure it regardless of what side of the pond we live on. When back in Easter 2010 I carried Mathilda into church, but could not sing, I listened to the voices around us and leaned into their prayers. I doubted there would ever be a time when the season of suffering would blow our family in a different direction, that we would ever get our little girl back. Narcolepsy is a profoundly disabling condition, and although it is not curable, it is treatable. And that treatment can be life changing.
Where our narcoleptic children have been silenced by the hypnogogic hallucinations that plague them at night and the sleepiness that grips them by day, whilst they lose their voices in the paralysis of cataplexy so that we cannot hear their fears, it is incumbent upon us to advocate for them, until the time comes when they can speak for themselves.
Read the Daily Mail article here.