Tuesday 24 July 2012

Ehlers Danlos Syndrome....

Hello "Cut out the Crap" friends and family....

As I sit here in the Sun writing this blog I realize my biggest worry at the moment is that I am time poor. I am a Mum of 4 who is juggling being a great mum, wife and business woman and quite often it feels overwhelming. I stop for a moment and breathe and look at all the positives and blessings in my life....and right at this very moment I KNOW how blessed I am to have 4 healthy children not to mention the good health of me and my hubby. This letter I received that I am sharing with you all today touched my heart so very deeply and if being time poor is my biggest worry at the moment then I am going to count that as a blessing too. 
I ask you to please share this, see if there is anything you can do, or anyone that you may know that can get this story heard.

Today and always I wish you great health and happiness. 

Take Care of You,
Collette x

 
To whom it may concern,

The following letter was written by our 9 year old daughter with Ehlers Danlos Syndrome. Please read it, and if you don’t know about the condition take 5 minutes to do a google search. Maddison is now trying to raise awareness for her condition. It is a debilitating condition with little coverage in the media, if any. There is no cure, treatment is supportive at best. She has written to the minister of health asking him to help get it out there and she also written this letter to the world and asked that I email it and ask people to keep emailing it to help get awareness out there. It is a rare genetic condition that results in a collagen deficiency. As collagen is found right through the body and is like a” glue” having a deficiency causes huge problems. It therefore affects her ligaments, organs, eyes, stomach, heart, skin and blood. She is very hypermobile and dislocates joints randomly. Putting on a jacket can dislocate an elbow, walking can dislocate an ankle. She is a very articulate young lady despite struggling with the everyday tasks required to attend school. Writing hurts and causes dislocated fingers as well as fatigue, she is in constant chronic pain. She is strong willed and determined to make a difference. Please email Maddy (maddy.parker@y7mail.com ) to let her know you have read her email and please pass it on to those you know. Lets help her get Ehlers Danlos Syndrome into the media! We are hoping that it gains enough community interest that people will do fundraisers and get some much needed funds to ConnecTeD for Kids foundation – a foundation that has research going on into connective tissue disorders such as Ehlers Danlos Syndrome and helps children with such disabilities. If this reaches anyone interested in fundraising please send the money to ConnecTeD foundation (details on their website) with a small note that it is due to Maddisons awareness efforts! She has had articles in the Herald sun and the Melton Leader so far, has had a radio interview and is nominated for the child of courage award 2012.

NSW has a connected tissue dysplasia clinic that is a multidisciplinary clinic for kids with connective tissue disorders. A one stop shop if you like, that is only accessible to those residing in NSW. This means those children in the rest of Australia do not have the same treatment options, we are forced to look for specialists in all different areas and as a result it is very hard to get a “team” together that is combined. Each one is a separate entity. It is not fair. We need to have a clinic in each state so that all Australain children with connective tissue disorders get the best treatment! This needs to be addressed by the government. Please help children like mine get much needed help.

Thanks for your time
Simon & Kathy Parker

Maddison Parker
Email: maddy.parker@y7mail.com
_________________________________________________________________________________________________________________________

Dear World,

My name is Maddison Parker, I am 9 years old and I have Ehlers Danlos Syndrome. I am wanting the world to understand Ehlers Danlos Syndrome so am sending this email out. I have some questions for you all! I would like to know why no one cares about Ehlers Danlos Syndrome? May was Ehlers Danlos Awareness Month and no-one really cared because I didnt hear anything about it anywhere! My grandma even sent a letter to A current Affair telling them it was the awareness month and again, nothing happened, they didnt even reply!!

A week in my life is full of pain. I'm constantly heating up my heat pack, and needing pain medicine. At school i cant finish my school work because Im in so much pain and all my joints dislocate. In case you dont know Ehlers Danlos syndrome is a connective tissue disorder that makes all my joints flexible, and pop out for no reason. It makes me very tired all the time, I cant play with all my friends because when I run around my joints pop out and it hurts and I get really tired. It doesnt just make my joints pop out but it effects my balance, my eyes, my heart, tummy, skin and even my blood. It is a really painful thing to have. It's not fair!

Im in and out of hospital and my wheelchair. I dislocate my joints every day and have pain all day every day. If I break a bone it takes me 3-4 months to heal when a normal person only takes about a month to heal! And my muscles disappear when the bones heal.

Im sick and tired of everyone saying there is nothing wrong with me because I look fine and that its all in my head. For lots of other disabilities you are trying to raise money to find a cure. But NO, not for Ehlers Danlos Syndrome. As I said before, I am in and out of hospital, I know every corridor of the childrens hospital and the sunshine hospital. Even some of the doctors say "You again!" So I want to know WHY arent you trying to raise money to help cure my Ehlers Danlos Syndrome???? The doctors dont know much about it and cant really help me.

If I could change one thing about the world it would be the way people understand Ehlers Danlos Syndrome! I want to know WHY no-one cares and WHY no-one is trying to raise money to find a cure! WHY don't I matter??

From Maddison Parker


2 comments:

  1. Thank you for posting these letters. My 3 year old daughter has severe hyper-mobility syndrome. It is a 'symptom' of EDS and we have been seeing the Rheumatology dept at the Royal Childrens Hospital. She does not have EDS but it was so concerning not knowing at the time. Her pain levels are up & down and she has trouble walking distances and keeping up with her friends. I really feel for Maddy and her parents. We had no idea EDS existed until we started researching collagen disorders to find information for our situation. I agree there is more assistance on offer interstate and something does need to be done. I wish Maddy and her family the very best of luck with their endeavours to raise awareness and send big hugs to a very brave little girl.

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  2. Thank you for the comment Elissa. It's the least I can do...spreading the world....not only for Maddy but for her sister and every one else suffering.
    Sending love and prayers to you and your family and your little girl also xxx

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