We are fast approaching the 5^th anniversary of Luke’s diagnosis with Duchenne Muscular Dystrophy on 25^th May. It’s a day I will never forget, the day my heart broke into a million pieces and the day life as I knew it changed forever. It was the day I learned my beautiful little boy, the pure love of my life would have a fate similar to that of my brother who died from Duchenne just a month past his 16^th birthday. But it was also a day that I made a promise to try with everything I have to change what having Duchenne means for a whole generation of children.

 

Each year on our Duchenneversary I make plans to add a positive spin to 25^th May, so that the date represents positivity instead of heartache, and this year I’ve decided to ask you to help me raise £5,000 for the Duchenne Research Breakthrough Fund by taking part in our £2 challenge. By raising £5,000 you will be helping me fund 140 hours worth of research. You’ll bring me 140 hours closer to saving my baby’s life, to making sure that Coen doesn’t have to suffer the pain of losing his only brother just like I did, and you will be helping the campaign to make this generation of boys the first to survive Duchenne.

 

We are offering to give £2 to 50 people who think they can turn that £2 into £100 for Leap for Luke and you’d be surprised just how easy it could be. Here are just some ideas to help inspire your imagination 😊.

 

1.       Ask a local business to supply a prize, purchase a book of tickets and hold a raffle.

 

2.       Penny Raffle – Use your £2 to buy a book of 500 raffle tickets and envelopes. Put 1 of each ticket numbered from 1 to 500 in an envelope, ask friends, family, colleagues etc to buy an envelope and they pay the number of pennies on the ticket e.g. if theirs is ticket 1 they pay a penny if its number 500 they pay £5 – £5 is the most anyone will have to spend. Ask someone to sponsor a prize and you raise well over £1,000

 

 

3.       Coffee morning at home – Use your £2 to buy a pack of buns, ask friends to come around and to bring some cakes, biscuits etc. Have a get together with friends and family and place a donations box in the centre of the table and ask your friends to make a small donation before they leave

 

 

4.       Car Boot Sale – Have a house clear out and use your £2 towards the entry cost of a car boot sale and donate your earning to your £2 challenge – or better yet organise a car boot sale of your own if you have somewhere to run it and use your £2 towards ink for printing posters.

 

5.       Get the kids involved – As your kids to draw keepsake pictures for family. Use the £2 to have them laminated and ask family to buy them.

 

6.       Sell your coin – Make your coin the new trend to have. Give your coin a special name and ask people to buy it so e.g. you sell it to a friend for £2, the sell it to their friend for £2 and son on until 50 people have bought the coin and you have your £100.

 

 

 

7.       Host a pub quiz – Organise a pub quiz night in your local. Use social media to promote the quiz and use your £2 to print off answer sheets.

 

 

 

8.       Ask a business to donate £100 – If you know a business owner who is looking for a charity to support why not ask them to contribute and use your £2 towards the cost of travel to the business?

 

 

 

9.       Give it Up – Ask colleagues, friends and family to give up something for a day and to donate the money they would have spent – you’ be surprised how quickly the money from those cups of coffee and bars of chocolate add up.

 

 

 

10.   Bag Pack – Ask your local supermarket if you can have a bag packing day, gather a few friends to each send an hour and use your £2 towards travel to the supermarket (big supermarkets usually have these booked months in advance so choose a small supermarket in your home town where it is likely you can get a date quickly and travel costs are minimal).

 

 

 

These are just a few ideas but we’d love to hear some of yours as well.

 

Thank you for considering the £2 challenge, people like you help to change the world by giving families like mine hope. Hope has become a life line for me, it is hope that keeps me going every day and that gives me the strength to fight for my boy’s life. Thank you for giving me that hope.

 

 

 

I look forward to hearing  your ideas to make this Duchenneversary a positive one 😊.

 

 

 

‘It is the set of the sails not the direction of the wind that determines which way we shall go’. (John Rohn)

This day 6 years ago I became a mum. My beautiful baby boy Luke finally made an appearance and life as I knew it was about to change forever!

When Luke was born I, like most new mum’s, imagined his whole life before him. I had visions of his pre school, saw him walk into Primary school and wondered who his friends would be. I wondered would he be into sports or maybe music or maybe something that hadn’t been invented yet? I wondered which secondary school he would go to and what new friends he’d find there? I imagined what job he might do when he’s older. Will he be academic, maybe he’ll be a teacher, or will he be good with his hands and do a trade? Or maybe he’ll be a scientist and make new discoveries. Who would he marry and how many kids would he have.? It’s funny how when our kids are born we have their whole lives mapped out in seconds when all they want to do is eat and sleep.

But the wind seemed to blow in a different direction and Luke was diagnosed with Duchenne, raising a whole new set of questions!

How will he manage in primary school? Will he be safe out and about? Will he find it hard to make friends when he can’t keep up and will someone stay with him to keep him company while the others run on? What will he do when his friends play sports? What if he likes a musical instrument but this horrible condition takes away his ability to even blow a whistle or hold up a triangle? When he goes to secondary school and his condition worsens will he be left behind? What if we don’t get a miracle and he doesn’t get to finish school before Duchenne wins? If he makes it to adulthood what job will he do and will he find love?

These are only some of the questions that play on the mind of a parent who has just been told their child has Duchenne, but on his birthday, just like I do every year, I promise to set the sails right so no matter the direction of the wind, Luke shall go forward and be great and have the best life that he can imagine, he will have the life that he deserves.

I promise to dedicate my life to help in the fight to change his condition from a terminal one to a chronic manageable one. I promise to use every ounce of energy I have to make his and his brothers’ lives as fulfilled as I possibly can. I promise to instil in him the knowledge and belief that he is great, that he is amazing, that he can achieve anything he wants to in life if he works for it and that no matter the challenges that life may throw at him, he has the strength to overcome them and I will be there with him every step of the way (or at least until he has a girlfriend and doesn’t want me cramping his style lol).

I promise not to let my fear of this condition impact negatively on his life. And I promise that we will try with all we have to change what having Duchenne means for all with Duchenne.

But for today my Lukie, I simply promise you a very happy birthday. I hope you love being 6. 6 is the best age because it’s your age 💙💙💙.