Weʼre raising £10,000 to Help with the cost of adapting our home to meet Luke's needs as he grows.
Crowdfunding is a new type of fundraising where you can raise funds for your own personal cause, even if you're not a registered charity.
The page owner is responsible for the distribution of funds raised.
Everyone has a real life super hero in their life. I'm lucky though... I have 2. My boys Luke and Coen are my reason for being, they light up my life in ways that I could never explain. For these boys I would lay down my life, no questions asked. I'm not going to lie, they drive my crazy at times but I couldn't imagine my life without them....
...Except, the thought of life without my big boy Luke often consumes me. Luke has Duchenne Muscular Dystrophy, a serious, severe and life shortening progressive muscle wasting condition. In a few years time, my bubbly, bright and smart little 6 year old won't be able to walk, soon after that he won't be able to lift a fork to feed himself or even lift his arm to scratch his nose. After that he won't be able to breathe by himself and his heart will become weak. And I don't want to even write what happens after that!
When Luke was diagnosed with Duchenne Muscular Dystrophy on 25th May 2012, I made promise to do whatever I could to try to save him and to make his life the best that it could be. Since then, I've raised around £100k for research into Duchenne, I've campaigned for improved care for people with muscle wasting conditions and advocated for drug developments and approval processes that get effective drugs to patients as quickly as possible. I always felt that it was important to help all affected by DMD and I still do, but the other part of my promise was to give Luke the best life ever and in order for our home, that we love, to be suitable for Luke's growing needs, we must carry our essential adaptations that are more extensive than we originally thought. While a chunk of this will be covered by the Disabled Facilities Grant, the grant will not cover all of the work and the equipment that is needed. So, following a few failed attempts at applying for DIY SOS lol, I've decided that any funds we raise in 2018 will be used to help us provide the adaptations that will help to make our home fully accessible to Luke as he grows.
Every door in our home needs widened, our living room needs extended to allow for turning circle space when Luke uses a power chair to get around, our front bedroom will become a wetroom and a new bedroom and storage area for equipment will be added and our front door needs moved to allow for greater access to the building. We also need the associated equipment which includes a height adjustable sink, a wet/ dry toilet and hoist tracks for hoists that will be needed to transfer Luke to bed and between his bedroom and bathroom when he is older.
While I am not comfortable with the notion of fundraising for things that are just for Luke, I really feel that we have no choice at this stage as these adaptations are essential and I hope that our followers and supporters understand this move. All monies raised will be placed in a dedicated bank account and receipts for all works and equipment will be kept and any monies raised over and above what is needed for the adaptations will be donated to a Duchenne charity.
I do hope that you can support us and if you would like to run an event to help us please do send us a message on our Facebook Page facebook.com/leapforluke.
Share this story
Updates appear here
Claire O'Hanlon started crowdfunding
Leave a message of support
Jul 30, 2018
Jun 29, 2018
Just finished our first 5k for Leap for Luke 🙌Thank you Luke for keeping us motivated!!We hope this will help you in some way towards getting your new house 🤗❤️Conor & Cathy-Ann xx
Jun 29, 2018
Well done cathy ann and nonner knew yous wud make it fot this very worthy cause xx
May 31, 2018
Become a supporter
Help Claire O'Hanlon raise more