Monthly Archives: December 2015

A year of Possibilities

With the new day

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

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Just a Little Boy, No More, No Less

hold him a little longer

It’s so easy to focus all our energy on how ‘special’ Luke is. Special, not just because he and his bother are more precious than anything in this world to us, but because of the life that he will live and the challenges he will face, in what will likely be a short life. But what’s more important than his ‘special’ needs, is the need to recognise that Luke, at heart, is just a little boy, no more and no less.

Like most 4 year olds, he makes his mummy laugh, he makes me cry, he drives me crazy and shows me what is really important in life. Just yesterday I found him peeing on my coffee table and laughing his heart out at how naughty he was for doing it –  yes, he was punished, but my goodness it was funny. All 4 year-old boys do that, right?

Maybe I shouldn’t mention how he let us down a bucketful the other day by telling his teachers he said the ‘F’ word in the car on the way to school. (He didn’t hear that from his mummy lol). Now he even manages to pull a chair over to the bench and climb up to get the sweetie tin and help himself to as much of the contents as he can before I catch him. He and his brother fight ding dust but they also kiss each other good night and sometimes even share. Being a little boy means he’s a little explorer. Every nook and cranny of every little thing has to be explored in great detail and if something should be broken, well by golly it’s time for him to get the tool box out and fix it. As a typical P1 pupil, he never tells us what he did in school and just the other week said ‘that’s enough talking Granda’ when his he tried to ask him about it. Like most little boys his hands are always sticky, his face covered in food, he has ice cream in his hair, and juice spilled down his jumper.

He wants to drive a motorbike and be a farmer with a John Deere tractor. He loves to do ‘jobs’ no matter how big or small – he might need to mow the grass, or plant a tree, or use his screw driver to fix the door hinges. His favourite question is ‘why’ and I usually have to make up the answer because the question is so random. He loves outside and mud and water, and all 3 together is even better.

He’s impatiently waiting for Santa. he believes in the tooth fairy and the boogy man, and fairies and any other mythical creature we tell him about.

He’s a typical little boy who is madly in love with his mummy, he still plays with my hair when he needs comfort, he never wants me to go anywhere and he spoils me with endless kisses and hugs (please tell me that bit doesn’t ever end ).

Luke doesn’t know that he is different. He doesn’t know that he will never drive that motorbike or be a farmer. He doesn’t know how much he will one day depend on the brother he fights with. He doesn’t know that in a few years he won’t be able to carry that tool box, or cut the grass or even have the strength to turn the screw in the hinge with his screw driver. He doesn’t know that in the not too distant future he won’t be able to stand up and pee on the coffee table lol. He doesn’t know his days of playing in the mud are numbered.

He just knows his name is Luke O’Hanlon and he is 4 and life is so much fun. And that is just how we want him to think. And so you see, Luke might have tough challenges ahead but just being a little boy is way more important than all of that for now. He’s a son, a brother, a grandson, a nephew and a cousin. He is all these things before he is a Duchenne patient.

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