By the Adelady Team + Charlie’s Family
When we ran into Charlie’s family in Tanunda, South Australia, it immediately felt like it was meant to be. Here was a beautiful little girl with the most loving and supportive family you could ask for, needing help – help that we could give them.
Here is Charlie’s Story xx
This is Charlie. Charlie has been fighting for 5 years now and has collected an impressive amount of chronic and rare diagnoses including a few that are so rare, they have no name yet.
She has a thing called Noonan Syndrome – it affects Charlie’s heart, brain, muscles, speech and immune system. As things have progressed for Charlie she’s now unable to walk very far and often relies on a wheelchair. Her brain does all sorts of funny things that doctors don’t understand yet and some days her pain is so bad she struggles to get out of bed.
And whilst Noonan has brought with it her amazing blue eyes and spectacular hair, with each passing year it also brings more challenges for Charlie, some of which are very unpredictable. Having Noonan Syndrome increases the risk of cancers, kidney issues, liver issues, seizures, allergies, heart and lung problems, digestive issues … the list goes on.
She’s an amazing little warrior and is SO much more than a diagnosis. Charlie has a wicked sense of humour, dry and witty, and is always cracking jokes. She loves Moana and Frozen and is a HUGE PJ Masks fan. Charlie dances unashamedly while watching Playschool. Charlie will say exactly what is on her mind, right when it pops into her head, often making people blush. Boy does she love us hard!!! Charlie loves making new friends, adores dogs and draws things upside down! She will draw animals with curly hair, so they look just like her. Charlie loves snuggling fluffy toys and is often heard saying “it’s soooooo fluffy”…
Charlie is unique, strong and courageous (and often very stubborn). She is Charlie Strong!
She’s our world, but we cannot fix her. There is no treatment and no cure.
We want to do everything we can to make her life as spectacular as it can be and that’s why we are asking for help. Help that will not only benefit Charlie but will help ALL people with Noonan Syndrome.
We have been offered an incredible opportunity to be involved in research study in America, and to attend a conference about Noonan Syndrome.
The research will involve 3 intensive days at Stanford University, California. The conference, where Charlie will meet doctors and geneticists and experts in the field is in Phoenix, Arizona and runs for another 3 days. We have to book our place by July 2018 to secure her spot. We are baring it all, and asking, please, for your help. We need to get there – and we are planning on doing it with a Ride…
So, we are jumping on our bikes and literally riding the distance from Mountain Creek, QLD to California’s Stanford University to help raise money. Lydia and Dan, Charlie’s Auntie and Uncle will be riding 1,900km from the Barossa Valley in South Australia to Mountain Creek in Queensland in a monumental Ride for Charlie. As for the rest of the distance we need a total of 11,900km, ten teams from all over Australia, with big hearts and strong legs will be riding 10,000km together.
We would love your support in this Ride for Charlie and we are so grateful for any help we receive. Every single dollar counts!
All we want to do is make life a little easier for Charlie and for all sufferers of Noonan. We need to raise enough to cover the living fees there, flights, accommodation and car hire and to cover the costs at home while gone.
We will be forever in your debt, forever grateful and we will never forget your kindness xx
:: To learn more about Noonan Syndrome, head here ::