And so it’s time to celebrate the ending of one year and the beginning of a new one. Some will be glad to see the back of 2015 and relish in all the possibilities that 2016 may bring. Others will welcome the new year with a sense of fear and dread, a sense that time is moving too fast when there is important work still to be done. But hopefully, most will enter into 2016 with a renewed sense of hope – hope for strength, for courage, for the health of a loved one, hope for abundance or hope for change that will create happiness in their lives.
For me, the dawning of the new year is really no different that the dawning of each new day, each new week or each new month. For every day I rise to the same thoughts and questions – will I notice decline in Luke’s condition today? How can I use today to give my boys as normal a life as possible despite Duchenne? When will we have a treatment? Will I be able to save my son?
Luke has a terminal illness, one for which there are no cures or treatments. It is a condition that will see him get worse over time, not better and one which will eventually claim his life. While most look to the future and envisage their children growing up and becoming more independent, more able to do things for themselves, we face just the opposite. Each year will see Luke become weaker and more dependent as he loses the ability to do the things you or I take for granted, things like walking, hugging, feeding himself and breathing. The stroke of midnight tonight will not magically change that. Tomorrow I will wake up and my thoughts and fears will be exactly as they were this morning.
And while I understand this fact, I must also relish in the possibilities that can be created in 2016. It holds the possibility for the approval of 2 new Duchenne (DMD) drugs by the FDA in the U.S. and the availability of Translarna, the first ever drug for DMD to be approved by the regulatory body in Europe , on the NHS. None of these drugs will help Luke but their approval will help pave the way for a pipeline full of new drugs that will help Luke.
It holds the possibility for trials that Luke may be able to take part in. Trials that will allow him access to medicines which might help to slow the progression of his condition. It holds the possibility of better understanding of DMD among health professionals which will lead to greater care, greater quality of life and ultimately a longer life for DMD children. It holds the possibility that there may be more good days than bad, it holds the possibility that Luke will have another year where he doesn’t realise he is different and where the effects of his illness are minimal on his day to day life. It holds the possibility that we can change what having DMD means, that it will no longer be a death sentence but merely a chronic condition that with adequate care can be managed.
The attempts to create these possibilities are being carried out on a global scale by families and clinicians all over the world who are determined to make our boys the first generation to survive Duchenne and as the new year looms I renew my resolve to:
- Play my part in ensuring new drugs are approved
- Educate myself in all areas of the care and management of Duchenne to ensure the highest possible quality of life for Luke
- Help other families as they struggle to come to terms with a diagnosis of Duchenne
- Create awareness of DMD among individuals, communities and health professionals
- To be first and foremost mummy to my precious children
And just as importantly, I resolve to never forget the help and support that we have received. Support that has allowed us to contribute over £50,000 to Duchenne research over the last 3.5 years, support that has given us the strength to deal with the condition on a daily basis and support that has given me the determination and resolve to end Duchenne once and for all. From the bottom of my heart I am eternally grateful for this support and I will continue to be grateful for all the support we receive in the year ahead.
And so it is with a hopeful heart that I wish you and yours a peaceful and happy new year. May your health be in abundance, may you measure your wealth by the love shown to you and may your happiness be ever plentiful.
Here’s to hoping for miracles in 2016 xxx