Hey everyone,
Good news in the world of medicine. My firend and fellow mom posted this news to her blog www.pleasefixsam.com.
Here is a link to the press release. It's not a cure, but it's proof that the fight is stronger than ever and that these kids have not been forgotten about.
They say there will be a cure in our lifetime. Please keep praying.
http://www.bizjournals.com/triangle/stories/2008/10/06/daily26.html?b=1223265600^1713258&brthrs=1
Marian
Saturday, October 11, 2008
Friday, October 10, 2008
Thanksgiving
Now more than ever will I be thankful.
Thankful for my boys, my joys.
Their eyes are full of love, hearts full of warth
Their little bodies holding them back
Leaving them unable to ride their toys.
His little legs, trying to just hold him up
Nothing about this is fair
But then, who said anything about fair.
I love my boys more than anything in this world
I sit here still devastated by this world.
None of this is getting any easier
The person who said that time heals all, must have not had sick kids.
With all of this I am so very thankful for my boys
Enjoy this Thanksgiving and make a prayer
To keep your kids healthy, then you will not have to bear
The sadness of knowing my hollidays may be limited
With my beautiful children who I adore!
Kiss your kids, please!
Marian
Thankful for my boys, my joys.
Their eyes are full of love, hearts full of warth
Their little bodies holding them back
Leaving them unable to ride their toys.
His little legs, trying to just hold him up
Nothing about this is fair
But then, who said anything about fair.
I love my boys more than anything in this world
I sit here still devastated by this world.
None of this is getting any easier
The person who said that time heals all, must have not had sick kids.
With all of this I am so very thankful for my boys
Enjoy this Thanksgiving and make a prayer
To keep your kids healthy, then you will not have to bear
The sadness of knowing my hollidays may be limited
With my beautiful children who I adore!
Kiss your kids, please!
Marian
Wednesday, September 24, 2008
Get the word out!!
Hello everyone,
Darius Weems is a young man who has inspired me. He is living with Duchenne Muscular Dystrophy. He lost his older brother to DMD.
He wants to sell one million DVD’s in one year about him and his best friends traveling across the country trying to “Pimp” his ride. The quest began in September and almost 14000 copies have been sold. A long way to go. The DVD’s are $20 - $17 goes toward MD research, which is much needed to help find a treatment or cure for this devastating illness and $3 to make more DVD's.I haven't seen the DVD, it’s ordered and on its way, but if you YouTube Darius Weems you can see the trailer of the DVD. You can visit his website at www.dariusgoeswest.org to buy the DVD. He is a real hero and a great inspiration for my boys and his story has really hit home with us.
Also on the Project Parent website, www.parentprojectmd.org there are Christmas Cards and ornaments for sale, with every penny raised toward MD research. Project Parent was started by a mother, Pat Furlong who lost both of her boys to DMD - within 6 months of each other. She is also another inspiration to me and our family.Please give generously to this cause, with your help we may be able to find a treatment or cure for these boys, and bring some hope to the parents and families of these children. I have learned recently that I am a carrier of this mutated gene, this means Mathieu has inherited this gene from me. A hard reality.We are in the process of finding out whether this is something I have inherited from my mother or if it was just spontaneous at my conception. The chances of our little one, Malaky being infected is 50/50. Some hard numbers to swallow. We hope and pray everyday, all day, that they find the treatment to reverse this devastating disease, or better a cure, and that it saves my boys, and all the kids with this. Please give generously.
Marian
Darius Weems is a young man who has inspired me. He is living with Duchenne Muscular Dystrophy. He lost his older brother to DMD.
He wants to sell one million DVD’s in one year about him and his best friends traveling across the country trying to “Pimp” his ride. The quest began in September and almost 14000 copies have been sold. A long way to go. The DVD’s are $20 - $17 goes toward MD research, which is much needed to help find a treatment or cure for this devastating illness and $3 to make more DVD's.I haven't seen the DVD, it’s ordered and on its way, but if you YouTube Darius Weems you can see the trailer of the DVD. You can visit his website at www.dariusgoeswest.org to buy the DVD. He is a real hero and a great inspiration for my boys and his story has really hit home with us.
Also on the Project Parent website, www.parentprojectmd.org there are Christmas Cards and ornaments for sale, with every penny raised toward MD research. Project Parent was started by a mother, Pat Furlong who lost both of her boys to DMD - within 6 months of each other. She is also another inspiration to me and our family.Please give generously to this cause, with your help we may be able to find a treatment or cure for these boys, and bring some hope to the parents and families of these children. I have learned recently that I am a carrier of this mutated gene, this means Mathieu has inherited this gene from me. A hard reality.We are in the process of finding out whether this is something I have inherited from my mother or if it was just spontaneous at my conception. The chances of our little one, Malaky being infected is 50/50. Some hard numbers to swallow. We hope and pray everyday, all day, that they find the treatment to reverse this devastating disease, or better a cure, and that it saves my boys, and all the kids with this. Please give generously.
Marian
Saturday, July 26, 2008
Reaction - the days to come, keeping my faith in the numbers
Our day today started out like most Saturday and Sunday mornings. We hear Malaky start to Jabber and squawk…we hear Mathieu make his way into the bathroom, then go into his baby brothers room to turn on the television. No doubt trying to keep him quiet so he can come and crawl into our already, too small Queen bed and wake us up. It seems to be his favorite place, between his two favorite people.
He is gone with Stephane, his biological father, as he does every other month, for a night. He likes to sleep in his bed though, so it is usually a tough sell for him to spend the night away from home. But as always we try and explain to Mathieu that it is the right thing to do, to spend time with him, even though he wants differently, now is not the time to start letting him make the rules.
As my husband says, he still has to be raised, and we have to raise him as hard as it is right now to keep discipline and structure, we wouldn’t be doing him any favors if we didn’t.
James told Stephane the news when we first found out. James is more articulate when it comes to speaking with certain people. Maybe it was my responsibility to talk to Mathieu‘s father. But right now, and especially then, I am just trying to get the words out of my mouth without falling apart.
Our family is now part of Muscular Dystrophy Canada, so I suggest visiting www.muscle.ca for all information on the disease.
The doctors told me I may be a carrier. If I am a carrier it means Malaky has a 50 50 chance of being positive.
One third of all cases of Muscular Dystrophy are spontaneous, which means not genetically passed. I hope to God this is the case. If I am a carrier of the mutated gene, my sister will need to be tested, then her girls…It may begin this web of investigation into my ancestry to find out the pedigree of my family.
The doctors say that it is usually the family that stumbles onto something, a new treatment or medicine or anything that may help find a treatment or possibly a cure. Please let me know. I will post here events that are happening in your area. Please read about Duchenne Muscular Dystrophy in the meantime and if you have any questions please let me know.
I will post again soon.
Marian
He is gone with Stephane, his biological father, as he does every other month, for a night. He likes to sleep in his bed though, so it is usually a tough sell for him to spend the night away from home. But as always we try and explain to Mathieu that it is the right thing to do, to spend time with him, even though he wants differently, now is not the time to start letting him make the rules.
As my husband says, he still has to be raised, and we have to raise him as hard as it is right now to keep discipline and structure, we wouldn’t be doing him any favors if we didn’t.
James told Stephane the news when we first found out. James is more articulate when it comes to speaking with certain people. Maybe it was my responsibility to talk to Mathieu‘s father. But right now, and especially then, I am just trying to get the words out of my mouth without falling apart.
Our family is now part of Muscular Dystrophy Canada, so I suggest visiting www.muscle.ca for all information on the disease.
The doctors told me I may be a carrier. If I am a carrier it means Malaky has a 50 50 chance of being positive.
One third of all cases of Muscular Dystrophy are spontaneous, which means not genetically passed. I hope to God this is the case. If I am a carrier of the mutated gene, my sister will need to be tested, then her girls…It may begin this web of investigation into my ancestry to find out the pedigree of my family.
The doctors say that it is usually the family that stumbles onto something, a new treatment or medicine or anything that may help find a treatment or possibly a cure. Please let me know. I will post here events that are happening in your area. Please read about Duchenne Muscular Dystrophy in the meantime and if you have any questions please let me know.
I will post again soon.
Marian
Friday, July 25, 2008
Finding out; the begining of a new journey
I never really thought about when my life would start. I thought, well, I am living, so my life is started. Little did I know.
Three weeks ago our six year old son Mathieu was diagnosed with Duchenne Muscular Dystrophy. We have another son, who may have the disease as well.
Our world seems to be falling apart right know.
This is my first blog, and I seem to have so much to say, I am scatter brain, still, after three weeks of knowing that I have one very sick child and potentially a second.....I am exhausted with grief.
I am a writer. So I figure I should write.
Write what I am feeling, what I am living.
He was a preemie baby, Mathieu.
He was about 2 years old when he finally let go of the chair and walked off by himself.
We sent him for x-rays to check his back and his legs, MRI's to check his brain. Everything was fine. "He has a wonderful physique," the doctor said, "why are you worrying?"
School came, and Mathieu seemed to fit right in with all of the other kids. He was having trouble with his mini motor skills in the beginning, but that seemed to settle itself. Then trouble with major motor skills. But again, everything fine. He played soccer, and okay, he wasn’t the fastest, or the most agile, but what the heck it was kids soccer. He played hockey, swam, wrestled, ran. Everything…just a little slower.
It wasn't until we moved to Ottawa, that things would change so much more than we thought.
I had it all planned for when we moved here. We finally had a family doctor, after living in Kapuskasing without a family physician for four years. We saw a posting for an Orleans physician accepting new patients.
Dr. Mobayed accepted us right away.
His little office in the back of his house, Johanne, his wife, the office manager greeted us. We felt part of the family right away. Dr. Mobayed noticed the way Mathieu walked into the room and said that it looked like he may be suffering from some muscle weakness and referred us right away to Dr. Doja and Dr. Jacob, neurologists at the Children’s Hospital of Eastern Ontario (CHEO).
It was a long six weeks, waiting for the results. Anxiety, fear, sadness, guilt. My husband and I thought, okay, how could this happen. I have cousins that are body builders, boys all throughout the family tree, perfectly healthy. Not one relative has ever mentioned muscle weakness, or stiffness, or anything.
The internet severed us as a useful tool in the beginning. Then it was our nightmare. So much information. So much stuff that we had no idea about, or even thought about. Scared of knowing what was happening to our baby.
I lay crying in my husbands arms night after night, fearing the worst, what was to come of all of this.
It was like in a movie. When we found out.
Dr. Doja confirmed my worst fear. All I heard was Duchenne Muscular Dystrophy. My head fell in my hands and I sobbed. I almost threw myself on the ground to stop the pain, I wanted to throw myself at the doctor to hold his mouth shut and say “How dare you say that about my son,“. My husband held me as I sobbed. I sobbed so much I thought I was going to die. Right there in front of the nurse and social worker. It hurts so bad.
It’s been three weeks. I didn’t think I would make it through that day. With the help of my husband James, my sister Tina, my best friend Terri, my grandmother and of all people, my new neighbor Tanya that I am staying strong. They let me lean on them, and they cry with me.
I will write again soon.
We find out next week about Malaky, our youngest. I feel sick about all of it.
Marian
Three weeks ago our six year old son Mathieu was diagnosed with Duchenne Muscular Dystrophy. We have another son, who may have the disease as well.
Our world seems to be falling apart right know.
This is my first blog, and I seem to have so much to say, I am scatter brain, still, after three weeks of knowing that I have one very sick child and potentially a second.....I am exhausted with grief.
I am a writer. So I figure I should write.
Write what I am feeling, what I am living.
He was a preemie baby, Mathieu.
He was about 2 years old when he finally let go of the chair and walked off by himself.
We sent him for x-rays to check his back and his legs, MRI's to check his brain. Everything was fine. "He has a wonderful physique," the doctor said, "why are you worrying?"
School came, and Mathieu seemed to fit right in with all of the other kids. He was having trouble with his mini motor skills in the beginning, but that seemed to settle itself. Then trouble with major motor skills. But again, everything fine. He played soccer, and okay, he wasn’t the fastest, or the most agile, but what the heck it was kids soccer. He played hockey, swam, wrestled, ran. Everything…just a little slower.
It wasn't until we moved to Ottawa, that things would change so much more than we thought.
I had it all planned for when we moved here. We finally had a family doctor, after living in Kapuskasing without a family physician for four years. We saw a posting for an Orleans physician accepting new patients.
Dr. Mobayed accepted us right away.
His little office in the back of his house, Johanne, his wife, the office manager greeted us. We felt part of the family right away. Dr. Mobayed noticed the way Mathieu walked into the room and said that it looked like he may be suffering from some muscle weakness and referred us right away to Dr. Doja and Dr. Jacob, neurologists at the Children’s Hospital of Eastern Ontario (CHEO).
It was a long six weeks, waiting for the results. Anxiety, fear, sadness, guilt. My husband and I thought, okay, how could this happen. I have cousins that are body builders, boys all throughout the family tree, perfectly healthy. Not one relative has ever mentioned muscle weakness, or stiffness, or anything.
The internet severed us as a useful tool in the beginning. Then it was our nightmare. So much information. So much stuff that we had no idea about, or even thought about. Scared of knowing what was happening to our baby.
I lay crying in my husbands arms night after night, fearing the worst, what was to come of all of this.
It was like in a movie. When we found out.
Dr. Doja confirmed my worst fear. All I heard was Duchenne Muscular Dystrophy. My head fell in my hands and I sobbed. I almost threw myself on the ground to stop the pain, I wanted to throw myself at the doctor to hold his mouth shut and say “How dare you say that about my son,“. My husband held me as I sobbed. I sobbed so much I thought I was going to die. Right there in front of the nurse and social worker. It hurts so bad.
It’s been three weeks. I didn’t think I would make it through that day. With the help of my husband James, my sister Tina, my best friend Terri, my grandmother and of all people, my new neighbor Tanya that I am staying strong. They let me lean on them, and they cry with me.
I will write again soon.
We find out next week about Malaky, our youngest. I feel sick about all of it.
Marian
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