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I've created this page because I want to make a difference. I'm inspired by the work of Leukodystrophy Australia and wanted to support them by raising money www.leuko.org.au The services provided by Leukodystrophy Australia are crucial to supporting individuals affected by leukodystrophy...
Please help me help them by giving whatever you can using the 'Give Now' button. The more people that know about Leukodystrophy Australia , the greater their impact, so please also spread the word by sharing my page with your friends and family. You may also like to run or walk - join my team or create your own. Either way, jump on board to support Leukodystrophy Australia. Thank you in advance for your generosity, it means a lot!
Hello, my name is Michael Edwards and I will be running 12kms in the 2020 Adelaide City to Bay on the 8th November. I have set up this fundraiser page in hopes that I can raise money for Leukodystrophy Australia to help find a cure for this horrible disease and to support individuals and families living with Leukodystrophy; and I heard that Harcourts may support such efforts.
Last year I created a team of about 20 people under the team name running for Ryder to participate in the 2019 City to Bay. we raised over $4000. Part of the funds were used to hold a family gathering to bring together all South Australian families for a chance to have some fun, reduce isolation, make new connections and friendships and to share knowledge and support in the future. We hope to gather an even bigger team this year and raise more money, awareness and support.
There are over 100 types of leukodystrophies, and although we will be raising money for people living with all types of leukodystrophies I created the team name Running for Ryder after my 2 year old son Ryder was diagnosed with a very rare and deadly type of leukodystrophy called Globoid cell Leukodystrophy or more commonly known as Krabbe disease.
When our son Ryder was born he developed fine up until around the age of 10 months. he was moving fine, sitting up, rolling, trying to crawl, patting the pets, eating, lots of chewing and sucking on his toys. Then one day we noticed that he had lost his balance and become very stiff on and off. he would cry when we would go to sit him down and he would stiffen up. He also started losing his mobility and wasn't eating properly. He threw up a lot as well.
Ryder was always a bad sleeper from day one, but his sleeping became worse. He was a very light sleeper and would wake up crying in pain and had a lot of irritability. The sleep deprivation was getting to us and was taking its toll on everybody in the house.
At first we thought that maybe his hips or skeletal structure was out of place so we took him to chiropractor. He suspected that it was something worse but we needed to eliminate some possibilities first. It took three more doctor visits until one of them took him seriously. The next day after seeing the last doctor we took him down to Flinders hospital to try and see a paediatrician. After waiting hours and hours and trying to convince the nurses that there was something seriously wrong with our son, one of them finally took us seriously and told the paediatrician who organized an MRI scan.
After getting the MRI scan the nurse informed my wife that they found something wrong with Ryder but wouldn't tell her what. Finally that night the paediatrician came back to the hospital and told us Ryder had leukodystrophy. Receiving the news hit me hard. I actually had a panic attack! But that was only phase one of the diagnosis. We still had to work out which type he had.
Ryder was subjected to a lot of uncomfortable tests, x-rays, blood tests and so on. For the first two days in the Women's and Children's hospital he hadn't eaten or drank anything so he had to have a nasal gastric feeding tube put up his nose. A very uncomfortable experience for him and a lot of new information we had to learn very quickly.
All up we were in the Hospital for about five days.
We were sent home and he was on his first lot of medication which helped out for a while whilst waiting for his results. When we found out he had Krabbe disease we could at least educate ourselves about the disease and go from there. Gradually Ryder was put on three types of medications and also on anti - biotics throughout stages of his life.
Ryder had to take all of this just to help manage his health and help him live life comfortably and pain free as his condition would allow him to. Like I said, this is just to help manage his condition - there is no cure for this horrible disease.
Krabbe disease basically slowly shuts down all the cells in the body including the vital organs. It effects brain cells which ultimately affect every other cell in the body as well. Understandably this puts tremendous stress on his already damaged immune system.
The average person diagnosed with Krabbe disease at infant phase usually doesn't live long past the age of 2 years. The leukodystrophy itself doesn't kill them, but leaves them so weak and sick that they are usually taken out by pneumonia or an infection.
Unfortunately Ryder lost his battle with Krabbe Disease on the 14/08/2019. He was just two years and two months old.
Towards the end of his life he had lost most of his eyesight, could only move subconsciously, was very weak and couldn't even gather up enough energy to smile. He was a battler to the end but was always fighting a losing battle. He died peacefully at home. He was loved so much and will always be remembered.
This is why we have reached out to you hoping that you can help support and also help us raise awareness for this horrible neurological disease.
My email address is:
Phone number: 0420512876
Michael and Lauren Edwards.