Friday, February 27, 2009

Hoping

I live in a small town...

Think "Little Pink Houses" minus The South.

One of the endearing things about living in the same town you attended preschool in (besides never being able to go to the grocery store in your pyjamas) is that you are never at a loss for people you know.

Even if you can't remember how you know them, there is still some comfort seeing familiar faces around every corner, at every school meeting, or when you're at Target loading up on Midol (that is the best time to run into a boy you had a crush on in high school).

It's comforting, this small town.

There is a family in my small town who needs your help.

I've known them forever, and I've not known them forever. They went to high school with my husband and I. We have mutual friends. I'd see them here and there, just like anybody else in this small town and say hello...just like they were anyone else. It is familiarity. It is shared histories. It is current commonalities that lead us all to the same baseball team last year where our boys played their hearts out and our other children goofed off on the sidelines. They had a brand new baby and let me hold him whenever I wanted.

I could hold that baby all day.

Crossing paths with them was not coincidental. I do not believe in "accidents" and I really do think that things happen for a reason.

When I received an email about what this family was going through, my heart sank. Not only was I devastated hearing news about their youngest son, a boy who made local headlines by not making it to the hospital for his birth - instead being delivered at home by a local paramedic, but I was crushed. Simply crushed. I can handle horrible news, I have been married to a firefighter for 12 years so I have had my share of being on the receiving end of some tragic stories, but this - this was something else and I don't think I'll ever, no matter how many years I live, get to a place where I can handle bad news involving children in a graceful manner.

I just can't.

But as soon as I was done sobbing, done making my brain go in a thousand different directions trying to come up with some kind of support, comfort, help, anything to give to this family, I realized that the answer was right here, in this space, which I've been rambling and rambling on about parenthood in for the last three years.

This space, which doesn't have the highest traffic of all the "mommy blogs" out there, but who sees traffic, nonetheless - and more than I do in a given day shuttling kids to and fro, this is a powerful space. And maybe, just maybe, one of you might know something that will help this family. Or, you know someone who know something or someone...

Just like that.

I've seen the power of this space draw people together. I've seen the connections made and real plans to "save the world" actually happen. Because of this space right here and people like her, I'm taking part in a group effort to feed the homeless this weekend.

This is a powerful space.

Because of this space, my son was able to raise over a thousand dollars for children in South Africa last spring.

Because of this space.

So, because of this space, I am going to share something with you, all of you, in hopes that somebody, somewhere knows something - anything.

Please, read:

"We finally have the results of all the tests Children’s has been running on our sweet baby, 12 months old. Unfortunately, the news is not good, in fact, it’s devastating. We found out that he has Duchenne’s Muscular Dystrophy (DMD), which is a progressive, genetic disease. It is the most common form of Muscular Dystrophy, however, it is the most serious as well.

Sometime around Kindergarten he will begin to experience muscle weakness and fatigue. It will only be obvious to us. He’ll basically just be slower and clumsier than other kids his age. Between 12 - 14 he will likely be confined to a wheelchair. Tragically, he will eventually lose this battle because of respiratory and/or heart failure. We can’t believe this is happening to him, or to our family for that matter.

We don’t know anyone with DMD. The doctors are telling us that there is nothing they can do, right now. We have been told just to sit and wait for symptoms. That’s not something that is easy for us to do. We’re not the “sit and wait to see” kind of people. We are also told that kids generally aren’t diagnosed until they show symptoms. His doctor has never seen a kid as young as him. We are looking for any HOPE that we can get. We are hopeful that with all the research being done that our baby will have a chance. But we can’t wait, we need to do something, anything that we can now to help our son. "


I have permission to share this information with you, in hopes that there might be something you may know.

Please, if you have anything to share, email me at blankenship(dot)carrie(at)yahoo(dot)com and I will pass the information along to my friend. Or, you can leave it in the comments here if you feel comfortable. I cannot offer you a fancy button or a promise to drive traffic to your site, but if you want to share this post with your readers, I'd be grateful.

This space, right here, that belongs to all of us, our informational superhighway, may just hold the answers this family is looking for. I am begging you to please, please share what you've got.

I have HOPE, and I believe in the power of positive thinking. And this world may seem really, really big to most of us, but when you start connecting people, start making the vital interactions, start building the bridges that make things happen, I think most of us will find that it's just like living in a small town...

Only bigger.

18 comments:

Carrie said...

I'm so sorry to hear about what your friends are going through. I cannot imagine. They (and you) will be in my prayers. Please keep us updated.

OHmommy said...

Oh gosh Carrie. My heart goes out to the family. I will spread the post around and perhaps someone who know anything will hear it.

xo

Every Day Goddess said...

So sorry to hear about their baby!! I will spread your post to my family and friends also! We will keep them in our prayers and good thoughts. Keep us posted on them please. My heart is breaking for this family.

Jennifer Mc said...

Kind of puts the whole toothpaste in the sink into perspective, huh??
I sent you an e-mail with some info that may be of interest to your friends. I will keep them in my prayers.

Ann(ie) said...

man. That is the kind of story that just stops me in my tracks. That poor family. They are in my prayers sweetheart!

flutter said...

oh, my heart!

Joanna Jenkins said...

Oh Carrie..... My heart is breaking. I have added this family to my family's church prayer list. I firmly believe in the power of pray and hope it brings comfort to them. I will also spread the word to my friends around the world for possible answers/solutions and of course more prayers. I will add this to my blog as well. xo

monstergirlee said...

I have no information to share, but heart goes out to the family, and I'll say prayers for them all.

Kyla said...

This is what Her Bad Mother's nephew has. It is progressive and there is no cure yet. It is a very sad diagnosis.

wyliekat said...

I was also going to direct you to Her Bad Mother. If she isn't aware of anything directly, she might well be able to connect you with other people who will.

Nora said...

Oh, I'm so sorry to hear the news. Why did they get genetic testing? Unfortunately I don't have anything to offer except that everything I have heard is consistent with what they were told. If there is a university medical center near them there might be a study going on they could get involved in?

I'm Kerrie said...

I don't get a ton of traffic, but I will post something at Sanity Department. Maybe someone will know something helpful. My heart goes out to this family.

Beth from the Funny Farm said...

What heart-breaking news for this family. Many prayers.

Sheila @ Dr Cason.org said...

I will look into some recommendations for you. Have they tried the national organization yet? There usually is one and it has TONS of info regarding the diagnosis.
How sad and scary- I can't even imagine what that must feel like and I too have the question what prompted the testing in the first place?

Kristin said...

My heart breaks to hear about this family getting this devastating news. I am the mother of a 10 year old boy with Duchenne Muscular Dystrophy. I am happy to communicate with this family to share information about this diagnosis. Our son was diagnosed at 4 years old and at 10 he is still walking and doing very well. Scientists and researchers are making extraordnary strides every day toward treatments and ultimately a cure for this disease. My son is the MDA State Goodwill Ambassador in Michigan and he is currently in a very promising clinical trial through Cincinnati Children's Hospital. Again I would be happy to communicate with this family and share some of the information that I have about this devastating disease! acureforalex@sbcglobal.net
Kristin

Sheila @ Dr Cason.org said...

Hi I hope I can write this before my connection dies- Ugh!

I have done some research and found the best article on emedicine.com

http://emedicine.medscape.com/article/1173204

the article was last updated this last February 09.

It gives the run down and the latest research. Unfortunately it looks like currently there is no way to stop what will eventually happen but they are looking at ways to slow down the process and a lot of research is underway.

The therapeutic strategies are in 3 basic groups

1.Supportive medical therapy
2.Research gene therapy
3.Research cellular therapy.

The article states that the gene and cell approaches are likely to be curative but are still under investigation.

Please have your friend read this article and keep seeking out medical facilities that might offer some hope and answers.

Information about Duchenne clinical trials can be found by looking for Duchenne Muscular Dystrophy on ClinicalTrials.gov for eligibility criteria.

My response on my blog was in no means telling her to give up. I hope that she can live and enjoy the present time and hope for a future for her son and family.

Let me know if I can help in any other way.

Blessings- Sheila Cason MD

carrie said...

Thank you Sheila. Thank you so very much. I will forward this entire comment to her. :)

- Carrie

Anonymous said...

I am always sorry to hear about a Duchenne diagnosis. For Duchenne, THE place to be on the internet for support, information and to connect to other people is www.parentprojectmd.org