Ride for Charlie!
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 and 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, really loves dogs and draws things upside down! She will draw animals with curly hair, so they look 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 bearing it all, asking, please, for your help. We need to get there.
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 $1 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.
We have hit nearly the half way mark to “virtual California”! With our cycling team from all over Australia!
Charlie's Mum (just for those of you that we have not had the pleasure of meeting).
Firstly, we just want to say a huge thank you to everyone so far for Your donations, your support has really blessed us. Thank you for sharing Charlie's Go Fund Me. It really does mean a great deal, probably more than you realise and definitely more than we can put into words.
We will attempt to keep you up to date with the happenings of Charlie, we will share a bit about her day to day life with you too.
We want to take a moment to share why we are trying to get Charlie to Pheonix, Arizona in July 2018, please keep reading as there is a little background information in this next part.
Here in Australia, there is limited knowledge on Noonan Syndrome, information and research that we seek out nearly always comes from the United States, Israel and England. We are very fortunate that due to me (Bek) being at university, I have free access to the latest scientific journal articles and research from overseas, otherwise we would be in the dark with what we should be doing to help Charlie or for best practice. We have had to, and continue to fight for services, doctors, medical teams, scans, tests and help for Charlie. No word of a lie, we have fought for Charlie her entire life, we wouldn't change that for anything, but we do hope to make it a little easier for other families who are currently dealing with the medical system and Noonan Syndrome and for families and individuals to come. At present, there are no teams dedicated to those who have Rasopathies (that is the 'group' of disorders that Noonan Syndrome is categorised under) here in Australia. We have to see each doctor or specialist separately and then we have to make sure that everyone who has anything to do with Charlie has a report forwarded so that all know what is happening. This system is flawed and creates a lot of work for us. We then have a battle to get Charlie seen by the right people at the right time, and to take preventative measures in her care rather than wait until something breaks in her to fix it. We will share a little more about that soon.
So, all of that to help you understand that our trip to Pheonix isn't a holiday (although, we do hope to be able to spend a little time and meet some of our incredible support people while we are there). We are going so that Charlie can meet others like her, so that we can understand her disease/s better, to link in and network with doctors, geneticists, families and clinicians who know and work in this field on a daily basis. And MOST importantly, we want to bring that knowledge back here, we want to share what we learn with other families and then we want/need to use what we find to push our MP's and medical systems to add Noonan Syndrome to the Better Start funding list and to have it recognised in the health care system. We also want to be able to start pushing the powers that be to look at forming a Rasopathy team to better serve our families. It is going to take time, hard work and dedication but it is necessary. We don't want other families to have to fight as hard just to be heard as we are having to do. These kids are amazing, they are strong and resilient in character, but they need help and a lot more than is understood. So thank you all so much, you have humbled us.
For My Charlie. If there ever were moments, When life could be reborn, If it were within my power, To make these things a reality, Heaven and hell couldn't keep me down. For I would move mountains, I would calm the raging seas, To help my little Charlie Climb the Everest she faces. Her mum a patient, loving angel, Her dad a gentle, patient, loving man, The siblings she has walk with her, Side by side, hand in hand. A Grandma though many miles away, Sheds tears daily, tears of frustration. Your Grandad aches for this little girl, Wishing mountains and seas were not Blocking the path he would take. Wishing doctors and ministers of our Government Would help him move those mountains, Calm those raging seas, And give Charlie exactly what she needs. Grandad.