Hi! This is Ethyn and he is 12, and turned the big 13 in June 2018. He has a little Sister, Charlee, who is 9 who loves him to bits. We live in a little town called Penola, South Australia. I am a carrier (Stacey) and have the Cerebral AMN so am on disability pension. My beautiful husband is my Carer.
Ethyn has Cerebral Adrenoleukodystrophy (ALD), a terminal disease and Addison’s disease. It is deadly, and treated with tablets. We have the best Neurological team and medical staff working with us. They truly are amazing. At aged eight, his ALD became symptomatic. Luckily, for us there was a treatment at this very same time in Boston, Massachusetts. Invited, we took this rare opportunity of Gene Therapy.
Our community friends and family rallied together to help us as a family get to Boston, stay for nearly 6 months, as well as keep our home and bills up to date. It was a full on experience. Ethyn was a trooper. Through countless needles, 5 rounds of Chemo, side effects, sleepless nights, tears and nightmares and so much more, we all kept smiling and supporting each other.
It is hard verbally to portray the reality for anyone else to understand the full impact. What really matters is our son is still alive and thriving and our family unit is stronger than ever.
Ethyn loves playing basketball. He and his team won the grand final last year. We never thought he could ever achieve such a thing in the early days. Basketball shoes can be expensive and sometime we need a bit of help. Coopers Brewery Foundation stepped in and gave us money to buy his shoes this year! Also very grateful to them for paying to send our boy on school camp. As you can imagine it is still very hard to let go of the apron strings but it is so important Ethyn learn to cope away from us too. He had a ball! We cannot thank Coopers Brewery Foundation and Leukodystrophy Australia enough for the ongoing support.
Thank you again from all of us, and remember to Keep Shining