Ladies Camera Club

20 Feb 2007

Campaign for Hypotonia and Dystrophies

In light of yesterdays **possible** diagnosis of Belle let me show you some photos of my Belle (more so below as opposed to this cutey here on the left!!).
These are not designed to shock or sensationalise her condition. This is something that I have asked her permission to use and she does not mind. I write this in light of ignorance to Myotonic Dystrophy and the very little known condition that it is. MD (actually known as DM!!! or steinerts disease and not steinherts syndrome as I quoted yesterday) affects many sufferers in many ways.
There are basic characteristics across the board but no two sufferers have the exact repeats or physique. On studying this condition closely Ellie doesnt show classic signs of CMD (Congenital Muscular Dystrophy) which indicates a drooping mouth stare. Ellie does however match the same milestone achievements that are recognised with CMD.
She sat up really late, practically never crawled, was nasal gastrically fed and walked at 23 months. Speech was late in coming (but sure makes up for it now - tee hee). Ellie's feet are incredibly deformed which indicates muscle wastage. These toes were straightened for a while on her right foot when she broke her leg almost two year ago. being in a cast for 6 weeks made them lovel and her crooked foot was perfect - for 3 days and then went back to its usual crookedness :(:(

Again, do not despair - this is what she is used to and she doesnt know any different (although her feet are her less sightly attributes of this condition). Her feet have been left like this for 10 years until last year when a specialist said that built up inserts in her shoes should correct her gait. Erm, nope.. it hasnt.
I cant tell you the trauma of trying to achieve a diagnosis for Ellies muscular dystrophy. Since she was 2 months old she has been seen in 9 hospitals, 2 private clinics and has and still is under Occ therapy, physiotherapy, neurologists, peadiatric specialists, various consultants, podiatry, dieticians and heart specialists. All having no idea she is like she is. I heard yesterday that its only recent that doctors can recognise this condition just by studying physique. thats only NOW - 11 years kind of late.
And what makes this condition more and more realistic in its diagnosis is that the mothers are a carrier. So today I look at myself and I am fine. I am fine!!! Until my momma reminded me that when I was 18 I had a milogram to try and determine why my fingers wouldnt grip and when they did, my hands would stick. And they often (not always) do that now. This is the main characteristic in DM sufferers in adults. It would appear I am the carrier - god, that hurts to realise that. And might explain my own fatigue that I get quite often but have disregarded and out down to just being tired. Nuh-uh. Oh crumbs. Its hard to take in.
So now to my campaign. Im not really a massive rally for Muscular Dystrophy. I just give what I can when I can. I spoke with a gentleman last night about this ocndition and its one of those charities that kind exists. Wouldnt we all love to give a tenner to each and every chairity available? Well Im not asking you to send anything. NOT AT ALL. But what I am asking you is to be aware of this condition and tell your freinds and their freinds about it.
And for some reason I dont want to be cast with the "wow, she is going down the Ali Edwards trail" neither. Remember, Ellie hasnt just suddenly caught this disease. She was born with it and its take 11 years to get close to an answer (not a cure or a solutions - just an explanation of what she is entitled to know and that is understand what is wrong with her). It is my duty to promote awareness of this condition and whilst I have freinds whose children have muscualr dystrophies such as Lorraine at Scrapagogo, Debbie at Scrap Magic, Kelly Godwin whose son has a MD and Heather who has a child with it .... its not as uncommon as it DID seem but it affects each of our children in such weird and cruel ways. I know Ellie is not alone and perhaps just this small scrapping community that I am in brings the needs and understanding of our kids to a neater perspective.
We cant beat it. Sso at least, for now, we can join it xx


Suzanne said...

oh Kirsty {hugs} you must feel like screaming at all and sundry WHY WHY WHY didn't they spot this sooner?

But now they have and there is going to be a plan of action to help you all forward.

You are such a special mum and Ellie is lucky to have you.

gentle hugs to you both.

lee woodside said...

Oh sweetie it must be so heartbreaking for them to have taken so long to find out exactly what was going on. Now at least you know what path you need to follow.
I agree you are both blessed to have each other and the rest of your family. xoxo

sharitas said...

Thankyou for enlightening us all to the conditons that affect yr luvly Ellie.
I haven't been stalking yr bloggie that long, but from what I read you are a very unique person, so positive with an excellent sense of humor! That my girlie is a gift that I hope Ellie has had passed on to her too!
I wish you both lots of strength, hugs & kisses & laughter always :)

XX Sharon

Karen said...

I agree with Suzanne - it must be so frustrating to know that it's taken all this time just to reach a point where they can actually understand and recognise Ellie's condition. But, on the plus side, it can only get better from now because hopefully it means Ellie is going to get the help she needs and deserves.

Huge hugs xxx

Heather the Blether said...

Kirsty my heart goes out to you and my love goes to Ellie.. you will not get any pawing kind of sympathies from me because neither you or Ellie need that... you have a very very special little girl and she has a very very special mommy... As you may or may not know my little one Drew is similiar to Ellie in the way of the hypotonia and undiagnosis Drew is 12 this year and still nothing... at one point we were told she was a freak of nature and told to get on with it... well as you did we did and what rewards we is a link to the site I refer to
I hope you and your lovely family continue in the strong and happy way that you have until now.. Be happy.
Huge Hugs

Suzie said...

Kirsty, I'm a lurker coming out of the woodwork here! You have brought tears to my eyes this morning. Your Ellie is supergorgeous, and I really hope you find the answers you're looking for. Big hugs to a very special little girly! xx

Glittery Katie said...

What a pity it's taken so long for Ellie to get the support she needs- still hopefully this will be the start of loads of great things for your little madam and you and Mark!!!
LOADS of squidgy hugs
kt x

Jenny said...

Hi Kirsty

Your frustrations are only fair and completely understandable. You can only trust your instincts and you knew to push further until you found recognition.
When I was younger, my sister was a teenager and had ME, I can't quite remember what it officially stands for but it's the illness where you are continually exhausted in a flu like way and have to sleep most of every day. It was an unrecognised condition at that time too and the doctors refused to believe that it was that, despite my Mum disagreeing with every other condition they came up with. They even prepared her for appendicitus surgery until they finally admitted at the last min that it was ME. My Mum knew what they were saying up until then was wrong, so always trust your instincts as you have. So glad you are finally getting somewhere Kirsty xx

Caroline said...

Just {{{hugs}}}.........

amber jane said...

Hunny I am happy that you and that sweet little girl of yours are nearer an answer and she will finally get the help she so rightly deserves and I am BLIMMIN' raging it took them so long to give that answer too you - All my love to you and Ellie and Mark xxxxx

Tracie H said...

Campaign away Kirsty.....with awareness comes understanding.
Love n hugs to you are very special people.

Anonymous said...

Kirsty what an awful long time to be fighting to find a reason for you all! but from what bit I know of you from you r blog I aggree you are a Very Special Mum and Ellie is A Very Special little girl and you are so lucky to have each other...
God Bless you and your family...
Hugs - Linda
P.S. from reading your post with Ros great pic by the way!) you must live not too far from me, I am between Liverpool and Manchester, our town is famous for it's Rugby team who are the TOPS :)

Anonymous said...

Knowledge is is a shame that they took so long in giving you that knowledge. You and Ellie have such a nice relationship. Lucky you...lucky her! Many hugs to you and yours. If you end up doing any sort of kit to raise money for MD let me know I'd be happy to contribute my time.

Ami D USA said...

Thank you for sharing information about your daughter. She really seems to be the light of your life.
God Bless and I wish you all - all of the best.
May the medical team and your family all be on the best path for treatment.
Good luck to you and your sweet Ellie.

marije said...

Just sending you {{{hugs}}}

Nicki said...

Yay kirsty!
My little Tegan was lucky to have had this ruled out with a simple but- for some reason like goldust- DNA test at a year old. Guess that's the old lottery postcodes crap for you:( There are so many kids out there with undiagnosed conditions that it is seriously scary. Tegan has Conductive education which costs us several hundred a year but means that she will hopefully avoid the deformaties and usual gait that befall these kids when left to the care of the state agencies but hey don't get me started on that one!
All the best and I hope you get your diagnosis soon.


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