DMD Awareness Day helps support kids living with Duchenne Muscular Dystrophy. This year it falls on Monday September 7th. Most common in boys, and diagnosed between ages of 4 and 14, we meet Ryan Kim, one boy living with DMD.
Duchenne Muscular Dystrophy is a condition affecting the muscles that make up 30 to 40 percent of our bodies. Muscles that help us walk, catch a ball, eat, breathe, and keep our heart pumping – imagine a condition that gradually stops all of those muscles from working. This is Muscular Dystrophy, and the most common form is Duchenne Muscular Dystrophy.
DMD is a condition you are born with due to a change in your DNA. It is most common in boys and leads to a progressive deterioration of muscle tissue throughout the body. DMD is usually diagnosed at about 4 years old and by 14, boys with DMD are usually already completely confined to a wheelchair. More recent studies have also shown that DMD can cause intellectual difficulties. By their mid to late teenage years cardiac issues may often become the biggest hurdle with survival of DMD.
DMD Awareness Day: Meet Ryan Kim
For DMD Awareness Day we’re sharing the story of Ryan Kim, pictured when he was in Year One
Ryan is 10 years old and the middle child in a beautiful family with four children. He has always lived on the Upper North Shore and attends a lovely local school. His family currently lives in a small three bedroom house in Hornsby.
Ryan Kim was diagnosed with Duchenne Muscular Dystrophy at age four. Before then, he was just like any normal, happy and active toddler. Life changed when the local preschool noticed that Ryan had trouble walking and could not use the stairs very well. Lots of test later, the Kim family had to start dealing with the fact that Ryan’s life expectancy would be greatly limited.
Ryan is 10 years old, the middle child in a family with four kids
Ryan’s wheelchair adorned with his newly acquired P plate!!
Ryan is a beautiful soul and a fighter. He has learning difficulties due to his condition but he has never given up on his love for school. Even during this difficult time of Covid, Ryan will not be held back and stay at home – he just wants to be like the other children and see his friends.
In Year 3, Ryan’s physical condition worsened and doctors realised it was time he needed an electric wheelchair. Now in Year 4, Ryan drives his electric ‘wheelie’ around the school with a smile always on his face. There was great excitement when Ryan received his ‘P’ plates earlier this year! He takes home a Year 1 Homework book with a 4 glued on top of the 1 so that he doesn’t feel left out. It is Ryan who wrote his “Wheels for Ryan” logo just recently.
Ryan drives his electric ‘wheelie’ around school with a smile
Ryan’s condition worsened he needs an electric wheelchair
There was great excitement when Ryan received his ‘P’ plates
DMD Awareness Day: Help the inspiring Kim family
A month or so ago, a few dear friends realised the most recent hardship that the Kims have been enduring.
Ryan must leave his electric wheelchair at school as it cannot fit in his family car AND fit his family.
- Although the government will convert some cars to accommodate an electric wheelchair, they can’t provide for a larger car.
- Without his electric wheelchair; outside of school, on weekends and holidays, Ryan is limited to manual wheelchair activities
- Ryan’s mother is also forced to carry him in and out of the car every time his needs to go anywhere. This as well as managing her highly active twin two year olds!
The Kims needs a larger car to fit the electric wheelchair
This is where, as a community, we are hoping to be able to help the Kim family at least in a small way. Let it be one less challenge for them to have to tackle. We want them to know that they are not alone and we are here to support them. We would like to help the Kims buy a new Minivan.
It is easy to want to help Ryan. His mother Soo is the most caring, loving and quietly spoken soul you will meet. They never ask for anything or complain at all. Soo was brought to tears even just by the thought that we might try to help them then with this endeavour. Ryan’s life expectancy is to age 15, and he turned 10 in February this year.
Please if you are able to support the Wheels For Ryan fundraising cause, it would mean a lot to the Kim family. For those who are not able to support Ryan financially, as it may be a hard time for many families, you can help by simply spreading the word, sharing the messages and raising awareness for both Ryan and DMD, particularly on Monday September 7th.
Make Compassion the most Contagious thing on the North Shore!
DMD Awareness Day: How to help
Supporters have started a My Cause crowdfunding page for Wheels for Ryan.
You can also find out more or support the family’s Instagram page and Facebook Page, using the #WheelsForRyan.
