Awstin's Fund: Living with Duchenne
My name is Jo, and together with my husband Mark, we want to ask for your help.
This picture is of Awstin our six year old son and, along with his big sister Evie, he is our absolute world. A week before Christmas in 2014 we were given the diagnosis that Awstin has Duchenne Muscular Dystrophy.
This is a rare and fatal progressive muscle wasting condition for which there is currently no cure. Awstin already moves slower than his friends, falls frequently, becomes easily fatigued and uses a wheelchair for longer distances. We have been told that Awstin will lose the ability to move without support between the ages of 8-11 years. The life expectancy for our son is his mid-twenties.
Awstin’s specialists have advised us that there are many things to do to get ready as Awstin’s condition gets worse over time.
We have started this fundraising page as the scale of what is happening to Awstin is far beyond our control and financial means.
Mark and I grieve for the life that we thought our son was going to have. We now realise that due to the progressive nature of Duchenne, we need to practically prepare for Awstin’s needs and to do so we need to accept your help.
The first major task is to get our house ready so Awstin can move safely and freely around his home. We need a double-storey extension and adaptations are required to the current layout of the house for Awstin’s electric wheelchair. The changes are critical. It will mean Awstin can access all of our family home, and have his own bedroom and bathroom. Awstin will need support with breathing and having his room upstairs next to our bedroom means we are there for him when he needs us.
We will get some support from our local council with this, but unfortunately it will fall far short of the whole cost. We think we will need at least an additional £50000 over what the council will fund. The whole process is becoming overwhelming and upsetting as we are worried that we might not be able to provide the essential things that Awstin is going to need to be comfortable and happy as he progresses through the stages of Duchenne.
This is where we ask for your help. Those of you who know our Awstin will know that he is such a fun-loving little boy with a cheeky personality who loves his cuddles, or as we Welsh say, cwtches. As a family we can truly say that our family and close friends have been phenomenal over the past three years for which we are eternally grateful!
We are now in the process of putting our heads together to think of ways to fundraise for Awstin’s needs and already have a few things on the cards to look forward to!
Here are some of the ways that you or someone you may know can help Awstin:
Ø Donate directly through www.gofundme.com to Awstin’s Fund.
Ø 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.
Ø Please share this page with anyone you know to share Awstin’s story.
Ø 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.actionduchenne.org
Thank you for reading!
Jo & Mark Lewis xx
