Owen’s Duchenne journey

My name is Amy and I am here to ask for your help.

My son Owen was diagnosed at 11 years old with Duchenne Muscular dystrophy, which is an extremely late diagnosis.

Duchenne is a rare and fatal progressive muscle wasting condition for which there is currently no cure. Owen struggles to keep up with his friends, falls frequently, becomes easily fatigued and uses a wheelchair for longer distances. I have been told that Owen will probably lose the ability to move without support by around the age of 15 years old. The average life expectancy is around mid twenties but with more understanding and research the life expectancy is increasing.

Due to the late diagnosis I have had to deal with not only coming to terms with the diagnosis and mourning the life I expected him to have, but also knowing that I am running out time to provide a suitable and accessible home for him. Although I have amazing people around me for support, who I am eternally grateful for, I am ultimately doing this alone.

I have started this fundraising page as the scale of what is happening to Owen is far beyond my control and financial means.

The major task I am facing is to get my house ready so Owen can move safely and freely around his home. There are many adaptations that are required to the current layout of the house for Owen’s electric wheelchair. The changes are vital. It will mean Owen can access all of our family home, and have his own bedroom. Owen will eventually need support with breathing and having his room upstairs next to my bedroom means I am there for him when he needs me.

I will get some support from our local council with this, but unfortunately it will fall far short of the whole cost. The whole process is becoming overwhelming and upsetting as I am worried that I might not be able to provide the essential things that Owen is going to need to be comfortable and happy as he progresses through the stages of Duchenne.

Owen has dealt with it all far better that me and is the kindest, most determined, funny young man and makes me so proud everyday!

There are many websites that provide information about Duchenne’s Muscular Dystrophy. Please have a read of some of the below and share as you wish with others to help raise awareness globally about this rare and fatal life limiting condition:

 www.musculardystrophyuk.org

Ways in which to help:

Donate directly through www.gofundme.com to Owen’s Fund.

Contact me directly if you have specific ideas for fun fundraising or know of anyone with services to offer, e.g. beauty, entertainment, food, sport.

Please share this page with anyone you know to share Owen’s story.

There are over 3,300 retailers including Amazon, John Lewis, Aviva, thetrainline and Sainsbury's, ready to give a free donation to Owen’s Fund every time you shop online through easyfundraising. It's really simple to do and doesn't cost you anything.

All you have to do is:

1. Go to: https://www.easyfundraising.org.uk/invite/1ID9A4/OFXOMU

2. Enter Owen’s Duchenne journey in the search box

3. Click Join Us and enter your details and click on Create My Account

4. Choose from over 3,300 retailers, do your online shopping as normal and our cause will receive a free donation at no extra cost to you for every purchase you make.

If you could please do this it would make a real difference to the fund!

Thank you for taking time to read our story!

Amy xx