DownSyn Forum

Grady's Mommy · Posted: April 21 2009, 3:10 PM Post subject: Do you know anyone with MD?

I'm struggling to hold it together after a conversation with one of Grady's classmate's mom's last night. Her son and Grady are friends in school and have been together for 2 years now. Her and I actually "met" at therapy in EI a few years ago. The boys will also be in class together again next year.

We've had chit chatty conversations over the years, but last night was the first time I got to actually TALK to her. She called me about a parent support meeting at the school and we just kept on talking. I finally asked her what Gage's diagnosis was. I knew he had autism because we talked about that briefly after she finally got the diagnosis.

But I was floored to find out he has muscular dystrophy too. I had no idea what that actually was, but she explained it to me that he'll eventually lose strength in his muscles. Typically they are in wheelchairs by junior high, and aren't expected to live past the late teens or early 20's.

OMG, my heart is breaking and I feel like I'm mourning the loss of him already. It's stupid, I know. She just rambled off these facts without her voice cracking or anything. I know she's had a long time to adjust but man, what a thing to deal with.

So, does anyone know anyone with MD? I'm curious as to real life experiences.

_________________
~Kathy
Grady (DS 5/26/04)
Hailey 9/20/06
Evan 7/27/10

Mary Beth · Posted: April 21 2009, 3:25 PM Post subject:

One of my babysitters that babysat for my older children had an older brother with MD. He died at age 17. They really need to do more research to find a cure for MD. It's a terrible thing for a child to have.
Mary Beth

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Mom to Rick 33, Stephanie (31 ), Elizabeth (28 ), Robby(26), Samuel (16 DS, TOF), Shane ( 14), Katarina (11 DS, AV Canal Defect)

lespring · Posted: April 21 2009, 4:57 PM Post subject:

Yes, I have a family member who has TWO boys who have LMD, and both have declined significantly in the past year. They're 12 and 14, and both are in wheelchairs, and they're in a teeny tiny house with no ramps. The don't have a van that is wheelchair accessible, instead getting around in a small sedan! We're trying to figure out a way to raise the money needed to get them a van.

_________________
~Leah~

My mom's blog
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And don't forget to visit MINE!
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mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

ElijahsMom · Posted: April 21 2009, 5:13 PM Post subject:

I have a positive story for you.

My mom's youngest brother, who is probably 47 now I'd say...Has MD. He is just now getting to the point where it is extremely difficult to walk, grasp things with his hands. He JUST "retired" working last year, and is FINALLY signed up for Disability which he could have technically been doing for a long time. He didn't want that, and wanted to work as long as he possibly could.

He holds Rae, and can still KIND OF walk up and down stairs. He recently started going around the long way to avoid stairs though. But he is doing well...and despite his age, you can't really even tell.

I know this is probably an exception to the rule, but keep the faith.

_________________
Elisha
Mommy to Elijah Thomas, 4 1/2 years

and RaeLynne Ruby Lee, 2 years

violettesmom · Posted: April 22 2009, 5:19 PM Post subject:

My nephew has a non-specified mitochondrial myopathy (at least I'm pretty sure that is what it is.)

It falls under the MD umbrella. They have been so wrong about this little guy since he was born, I don't buy anything they say about him. He had the lowest tone you can imagine as an infant and they said he'd never walk. He does. They said he'd never talk. He does. They said if he goes through a big growth spurt he may not be able to walk. We'll see.

Other than that, my bro and SIL don't talk much about long term prognosis - I think this little guy has proven them wrong so many times they aren't really taking any negative outcome talk to heart...

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vonda · Posted: April 22 2009, 6:11 PM Post subject:

There is a little boy in 2nd grade with Halle and Noah who has this. I just had that same talk with his mom this past summer, talking about his diagnosis and about Noah and everything. She teared up when she told me that by middle school he may not be able to walk and that she expects he won't have a long life. He is SO stinkin cute, but what I didn't know, and I'm not sure it's due to the medicine he is on or what, but this child has muscles like a body builder. He is really short and little, but his legs and arms look like he works out every day, I mean BIG MUSCLES. It's very odd. She explained it's all part of the muscular dystrophy.

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Vonda, mommy to Peyton, Sophie, Noah(Ds) and Halle

kzmom · Posted: April 22 2009, 9:51 PM Post subject:

I teach middle school and have had two students in my 10 years with MD. Both were in wheelchairs. Both had friends and were just as wonderful and just as annoying as other middle school boys can be! Wink

I know one has since died when he was about 18... the other I don't know about. So sad.

Is this something that affects males more than females? I just noticed that every post talked about males.

_________________
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Kristen
Mom to Zach (Jan 2005) and Katelyn (Feb 2008 DS)

mary c · Posted: April 23 2009, 5:54 AM Post subject:

We have a friend who has a very severe form where most people die by the time they are 7. Our friend is in her mid 20s, has graduated from college and graduate school and has a full time job, despite the fact that she is virtually paralyzed (has a little movement in one hand, enough to run a computer) and has been most of her life. Our friend is truly inspirational as despite the severe limitations on her life she is a very positive and happy person who lives every day to the fullest. It is a terrible condition, but she soars above it.

_________________
Mary
Mom to Libby 6/92, Alex 9/93, Anna (DS)12/12/03

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Grady's Mommy · Posted: April 23 2009, 2:20 PM Post subject:

kzmom wrote:

I teach middle school and have had two students in my 10 years with MD. Both were in wheelchairs. Both had friends and were just as wonderful and just as annoying as other middle school boys can be! Wink

I know one has since died when he was about 18... the other I don't know about. So sad.

Is this something that affects males more than females? I just noticed that every post talked about males.

The kind (Duchenne) of MD that Grady's friend has is found only in boys. But there are 100 different types of MD.

ETA: I have no idea why my font looks so big.

_________________
~Kathy
Grady (DS 5/26/04)
Hailey 9/20/06
Evan 7/27/10

Grady's Mommy · Posted: April 23 2009, 2:22 PM Post subject:

vonda wrote:

There is a little boy in 2nd grade with Halle and Noah who has this. I just had that same talk with his mom this past summer, talking about his diagnosis and about Noah and everything. She teared up when she told me that by middle school he may not be able to walk and that she expects he won't have a long life. He is SO stinkin cute, but what I didn't know, and I'm not sure it's due to the medicine he is on or what, but this child has muscles like a body builder. He is really short and little, but his legs and arms look like he works out every day, I mean BIG MUSCLES. It's very odd. She explained it's all part of the muscular dystrophy.

Gage is the same way. He looks like a little football player! I wouldn't say he has big muscles, but he's definately a solid kid. Not overweight, just "strong". I told his mom I never would have guessed MD and she said "I know, every time we go to the ped. they are like 'are you sure?'".

_________________
~Kathy
Grady (DS 5/26/04)
Hailey 9/20/06
Evan 7/27/10

Kenneth's Mom · Posted: April 23 2009, 4:59 PM Post subject:

This has been on my mind lately. It's now my newest possible reason for Kenneth not sitting, standing, and walking Confused

. Denial isn't just a river in Egypt. I just don't want to know. I've had enough bad news lately Sad

.

_________________
Maureen, Ed, Brian, Kevin, Timothy, and Kenneth

kris10z · Posted: April 23 2009, 5:42 PM Post subject:

A local family here has a 22 yo son with Ds and MD. He is one of the only cases with that dual dx. His muscles continue to deteriorate, but he treks on.

_________________
Kristen: Wife to Scott, Mama Bear to Ethan
(05/25/01, DS & ALL)
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