My Bendy Body – book review

A few weeks ago we (very excitedly) received our copy of "My Bendy Body"  written by Michelle O'Sullivan. Michelle is an Australian occupational therapist that specialises in the Hypermobility Syndromes.

My Bendy Body is a picture book that talks about how living with joint hypermobility syndrome (or Ehlers-Danlos Syndrome) impacts on the lives of children. It does it in a way of explaining how even though "I" might not be able to do things like all other kids "I" can still do many of those things if we change them a little and "I" can have a rest. So it is not about the "I can't" but the "I can". Something that all children with special needs need.

The book is aimed at preschoolers and infant primary school children. It is a great way for these young children share about the condition when they don't have the words on how to explain it. It is a great resource for all children with Hypermobility Syndrome and Ehlers Danlos Syndrome to be able to share with their family, friends, preschools, schools and groups.

I recommend any parents, family member, teacher or friend who has a child that has a child that has been diagnosed with Joint Hypermobility Syndrome or Ehlers Danlos Syndrome to get a copy of this book so you can get a better understanding of how these conditions affects the life of these children. It is a fun and easy way to share with the world more about these conditions.

Copies of My Bendy Body can be purcahsed here

 

I have no affliation with this book. I just think it is a great resource for those experiencing life with children who have joint Hypermobility Syndrome and Ehlers Danlos Syndomre. Especially when these conditions are not very well known.

 

Maddy’s Quest for EDS

Quest for EDS

 

Maddy is such an inspriational little girl. She is 9 years old and both her and her sister, Kayla (7) have Ehlers Danlos Syndrome (EDS), a rare connective tissue disorder. Maddy is on a quest to raise awareness about EDS so that people will understand about the condition, and one day find a cure. Just like our Rapunzel, Maddy and Kayla face challenges every day despite the fact that she appears so "normal" to society. Even doing the most simpliest of tasks that we take for grant and be very tiring and painful.

I first heard of Maddy when I received a link via the Connected Foundation Facebook page back in May. Maddy had written a letter to the world  asking why noone seemed to care about EDS since the EDS awareness month went by with no mention of it depsite her grandmother sending letters out to television and radio stations. She asked her mother if she could email to everyone she knew asking them to read it and pass it on. Since then Maddy's campaign has reached all around the world. She has had television  and radio interviews, newpaper articles, even letters from the Prime Minister of Australia. 

For her achievements Maddy was entered in the Pride of Australia Awards  – Child of Courage, where she was awarded the Victorian Award. She is now a finalist for the People's choice award. So please take the time to read over Maddy's letter and help her raise awarenes for EDS (and JHS) so that kids like her and our Rapunzel may get the support they need and maybe oneday find a cure.

And please don't forget to take a few minutes for vote for Maddy (Maddison Parker) for the Pride of Australia awards here – you only have until the 8th of October 2012!

 

To whom it may concern,

The following letter was written by my 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 now 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. 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 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!

Thanks for your time
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

 

You can follow Maddy more on her facebook page.

Let's help raise awareness for Joint Hypermobility Syndrome and Ehlers Danlos Syndrome.