Letter from a 9 year old with Ehlers Danlos Syndrome

This letter is from a 9 year old who has Ehlers Danlos Syndrome and is trying to raise awareness.  Ehlers Danlos Syndrome is what me Simon, Jeremiah, Isaac and Malachi have and most likely Eleanor and Elisha as well.  It is the reason why Isaac uses a wheelchair and Malachi has reflux.  Maddison explains Ehlers Danlos Syndrome a lot better than me so I will hand over to her.


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

Isaac and school

I have no idea how to turn this picture round!  Isaac is starting school this September.  So a few weeks ago we had a school entry plan meeting.  Well, Simon went to the meeting.  Isaac was sick the night before so I stayed at home with him, Malachi and a mountain of washing.  We are now waiting for assessments from OT and wheelchair services.  This week we have started potty training which has been difficult because Isaac struggles to get on and off the potty by himself.  Not sure how they are going to manage that at school.

We have the long awaited genetics appointment tomorrow.  The letter says we will be in there for 2 hours.  Jeremiah and Isaac have been bribed with a trip to the park afterwards if they have been good.