I’m fundraising in support of my son, Angus Oakley .
Why I’m skipping
I’ve signed up to do 100 skips a day throughout August to raise money for Children’s Medical Research Institute and help save more kids’ lives. Can you help by sharing this message with the people you know and asking them to donate too?Here's just one story explaining why this cause is so important:
My Son Angus Was born with an ultra rare Genetic condition that effects around 500 boys worldwide, He is the only one known in Tasmania to have this condition that effects his thyroid hormone levels. At the age of 4 months old we started noticing that Angus had very poor head control and all over low muscle tone which also was effecting his ability to swallow and support himself. Angus struggled with really bad reflux and getting sick all the time and after multiple changes of formula, Hospital stays and testing for different allergies and going down the line of Genetics testing, being seen by his paediatrician along with a paediatric Endocrinolojist and neurologist. multiple hospital trips went by for appts and admissions and myself having a gut feeling that I knew something wasn’t right and I wasn’t going to like the answer to what his results were going to be we found out that Angus had Allan-Herndon-Dudley Syndrome commonly “or not so commonly” we should say known as MCT8 Deficiency! This genetic mutation was found carried by myself his mother which I had no idea I even had and it affects 50% of Males born with the mother being a carrier. This is something that we now know has been passed down to my eldest daughter aged 8 Who is also a carrier of this condition and slightly effected by this condition being called a symptomatic carrier and our beautiful boy Angus aged 4 has been fully effected. Angus presents with global Hypotonia and uses a wheelchair and a walking frame to get around and relies on his family, Friends and carers to assist him with every day living and feeding. Angus needs constant manual handling and is fed through a feeding tube in his stomach called a PEG and has issues putting on and retaining weight due to his condition and has a compromised immune system. Angus is non verbal and relies on facial expressions and his Eye Gaze computer to communicate with his peers around him. Given all of his daily struggles and not knowing if Angus will ever gain the ability to walk, Talk or do things independantly he shows us all great strength, Courage and determination to get things done his way with a beautiful smile on his face that gives us all hope every day! All though we know this Syndrome is life long and it’s not known what Age our beautiful boy will grow to before he gains his Angel wings we do our absolute best to make sure that he lives his life to the fullest every single day and that he is included in every possible activity we do every single day! We love our Little man so very much and although life has thrown many curb balls and we still face many more into the future we tackle them head on and with confidence that one day we might just find a cure or a treatment that will help Boys with Angus’s condition! Awareness and knowledge of his condition is very much needed in our community and in our world!! 🤗
Join me. Share this message. Donate. Thank You!
Raised so far
With your help, I have raised...
$60
You’re helping fund research to find cures for kids with genetic diseases. Every dollar counts!
Biggest Donor
Vicki Ackerly
$24
Thank you so much to my biggest supporter, Vicki Ackerly, for donating an incredible $24 to help fund vital research into curing children’s genetic diseases.
My Impact
So far this year, I've helped fund...
1
Hours of research
Every $50 raised funds an hour of vital research.
Thank you to our donors
$24
Kt
Proud of you xx
48 minutes ago
$24
Vicki Ackerly
Good luck laur
53 minutes ago
$6
Matched Donation
1 hour ago
$6
Laura Rainbird
1 hour ago
"Proud of you xx"