Elhers Danlos Syndrome

Last time I mentioned Ehlers Danlos Syndrome on my blog my post views suddenly went up.  When I typed Ehlers Danlos blog into a search engine I got a few links to various blogs but most of them hadn't been updated for a long time.

Since I posted Maddison's letter on my blog I have thought about the things she wrote about the lack of awareness of Ehlers Danlos Syndrome.  I know I had never heard of it until Isaac was diagnosed with hypermobility and I did some googling.  If you look hard enough there is a lot of information and online support groups out there but you do have to look for it.

Somewhere between 1 in 5000 and 1 in 10,000 people have Ehlers Danlos Syndrome.  This makes it rarer than Downs Syndrome (1 in 800), Autism (1 in 100) and Cerebral Palsy (1 in 278).  It is only slightly rarer than Spina Bifida (7 in 10,000) which I was quite surprised at as I think Spina Bifida is a lot more well known than Ehlers Danlos Syndrome.

When people ask me what's "wrong" with Isaac (and we get this more often now he has his wheelchair) and I explain about Ehlers Danlos Syndrome I normally get the "I've never heard of that before" response.  If I say that the main symptom is hypermobility a lot more people know what that is also most people's experience of this is being able to bend their little fingers and thumbs backwards.  It's not much but it's a start.

The big boys are back!

Jeremiah and Isaac arrived home today.  The house is already a bit untidier with them here and it's definately noisier but it's so good to have them back.

On Tuesday, Malachi and I took advantage of there only being the 2 of us and we went to one of the toddler groups that is still open in the school holidays.  It was a bit more expensive than the other toddler groups we go to (£3.10 per child) but it was good value for money as they had a huge bouncy castle, various craft activities, ride on toys, cars etc.  Malachi loved it.

Today all 3 boys spent ages in the paddling pool.  The weather has been so lovely this week.  Photos to follow when I can get them off my phone.

Malachi's orthotic appointment

Jeremiah and Isaac are away on their holidays so it was just me and Malachi at the hospital this morning.  The good news is that they now do piedro boots small enough for Malachi's feet.  The bad news is the tiniest ones look like the shoes you hire when you go bowling.  Hopefully it won't be long before his feet are big enough for the boots like Isaac has which look a lot nicer I think.  I also took the opportunity to take some photos of the old building before it gets knocked down.  I have fond memories of pacing up and down the corridors there while in early labour with Malachi. 

Pool party

Today we went to a pool party at Simon's auntie's house.  A good time was had by all and I got to have squishy newborn cuddles with Simon's cousin's new baby.

Malachi was very interested in the water although when he got in he decided he didn't like it.  Isaac wasn't keen at first but when he finally got in he loved it.  Jeremiah loved the water as usual.

End of term

Jeremiah finished year one yesterday and today was Isaac's leaving party and presentation thing at preschool.

No school runs for six weeks!  I've got a few things planned for the holidays, including various craft activities and trips to the park.

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's new wheels

Isaac's wheelchair arrived on friday, earlier than expected.  We have taken it out 3 times and he has also pottered around the house, garden and car park.  In some ways it's easier than the double buggy and in some ways it's harder.  The wheelchair with Isaac in feels a lot lighter and easier to steer but it's also narrower which makes pushing it awkward when I have Malachi strapped to my front.  I'm carrying everything in a rucksack which is awkward but at least I will think carefully before buying random stuff in ASDA if I have to fit it in a rucksack.

However Isaac absolutely loves it which makes all of it worthwhile.  In the buggy he was almost always in a sulk or a strop but in the wheelchair he talks to everyone.  Jeremiah's teaching assistant got a shock this morning at school when Isaac started talking to her.  Malachi is also enjoying having a better view.

Isaac in his wheelchair

Dancing with myself

Today has been one of those days. It started with Isaac not wanting to wake up which meant I had to dress him. He has fallen off the toilet today and generally been unsteady on his feet. So today I've been trying to do bits of housework in between helping Isaac with everything.  Of course Malachi wasn’t keen on Isaac having all the attention so he was shouting as well.  Nothing terrible happened but it was one of those days where I feel like I’m running round in circles.  So I did the only thing you can do in this situation.  Jeremiah, Isaac and Malachi had a quick early tea and for the last ½ an hour we have had my glee dvd on and we have been watching all the songs from the special features.  Malachi is in the jumperoo and the older boys are dancing.  Well, Isaac is on the floor mostly but at least he is happy.  Jeremiah is attempting to breakdance which is absolutely hilarious.

No news from the SENCO today.  But the class list for next year will be posted either tomorrow or friday.  I don't mind what class Jeremiah is in but he is desperate to know one way or another.

Jeremiah's birthday, our wedding anniversary and more school stuff

Jeremiah had a great birthday.  Here is is cake which was not made by me!

On Saturday we went to st fagins in the rain for Jeremiah's birthday treat.  It was very good but we got very wet.

Malachi was standing holding on with very little support.



Yesterday I asked the school senco for an update on the adaptations as I hadn't heard anything.  She hadn't heard anything either so she is going to try and chase her up.  The paperwork needs doing by next week so we're getting a bit tight for time now.  The senco is also not happy with the lady from the pims team who said that Isaac didn't need any adaptations because that slowed everything down.  After talking to me and getting to know Isaac she is also now seriously considering applying for extra funding for Isaac which is pretty much the same as a statement after months of people saying he wouldn't need it and me not agreeing.  We're still waiting to find out next years class allocations.  The headmaster has sent out a letter saying he appreciates the concerns of the parents but no decision has been made yet.  I hope they decide soon as Jeremiah is getting twtchy about it and is now asking several times a day.

Finally, today is our wedding anniversary and we have been married for 8 years.  I could only find one wedding photo on the computer.  Simon's uncle had been teasing me the day before saying that I would be late and I was determined to make it there on time.  I made it to the church with a couple of minutes to spare and I ended up being late because I'd forgotten the photographer would want to take photos.   

You can't see it very well in the photo but I had a cathedral length veil with sparkly bits in and a huge train.  One of the advantages of being short is the train and veil were about a foot longer on me than they were meant to be.







Jeremiah is 6

6 years ago I gave birth to Jeremiah at home in the birth pool.  I can't believe it's been six years since I held that tiny slippery person in my arms.

I don't have any of us together in the pool (just a few of me in labour which I will never post on the internet!) but here is Jeremiah about 1 hour old in the moses basket.

Jeremiah aged 1 and looking very like Malachi is now

Jeremiah aged 2 hosing down the birth pool after Isaac's attempted home birth

Jeremiah aged 3 at legoland

Jeremiah aged 4 with Isaac aged 2

Aged 5 in the pool where he was born

Aged nearly 6