New Normal
I guess I'll start this one.
I lost my 16 year old son to DMD March 31, 2007. It has been very hard, he is missed each and everyday. We are learning to live the "New Normal" but, we will never be the same. He was an amazing kid and just knowing him blessed our lives.
I have continued being a part of the PPMD family because... it's not over yet, there's still no cure and I know my son would never want us to give up.
The PPMD community has been a big part of the healing process. They have let me share my memories of my son and many of it's members have offered support when I needed it the most. I know it's very hard for some to even look at my postings, but for those who have and offered support, I thank you. My hope is that in some way I can give back by offering help and support to others as well. God Bless all of you.
Sincerely, Mary
I lost my 16 year old son to DMD March 31, 2007. It has been very hard, he is missed each and everyday. We are learning to live the "New Normal" but, we will never be the same. He was an amazing kid and just knowing him blessed our lives.
I have continued being a part of the PPMD family because... it's not over yet, there's still no cure and I know my son would never want us to give up.
The PPMD community has been a big part of the healing process. They have let me share my memories of my son and many of it's members have offered support when I needed it the most. I know it's very hard for some to even look at my postings, but for those who have and offered support, I thank you. My hope is that in some way I can give back by offering help and support to others as well. God Bless all of you.
Sincerely, Mary
Replies to This Discussion
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Permalink Reply by Liisa Underwood on
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Oh Mary, I know it is tough to continue on loosing your son so young and even to loose him at all. My prayers for strength and peace are with you and your family. May you persevere in the things that seem impossible.
God Bless, Liisa
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Permalink Reply by Polly Sundeen on
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Mary - There aren't words that sufficiently express how much you and your family mean to me. I am so glad that you have continued to share pictures and stories of Kenny. I can't tell you how much it has always meant to me that even though he was 8 years older than Cole that he never acted like Cole was a pest and was so kind to him. I will forever cherish the memories of them together and how lucky we are to have had the time we did.
Love you!
Polly - Attachments:
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Permalink Reply by Jill Keenan on
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I am so glad that you still share stories and insights about your son and his life. If it's hard for us to read, it must be near impossible to live it and write about it!!! I was telling my sister some things I'd read about research the other day and she was like, "Can you believe that you even know half the things you do about DMD, medical and scientific terms, etc.???" Not something I know any of us ever thought we would have to deal with. I always thought that those with "special needs" children were somehow just naturally "that way"--I don't know how to describe what I mean. It seemed like second nature to them, the way they were with their children. Now, I see and know that it is something they had to grow into and muddle their way through to figure out how to be "those parents." What other choice did they or we have? I always admired them for their strength and patience--I only hope to become like them. You seem to have managed the role beautifully and you and your family are an inspiration for all of us! (Don't you wish you could stop being "admired?" I know I do--I'd love to go back to being a regular ol' parent, where no one tells me how great they think I'm handling all of this!) So, thank you for continuing to be part of our "life." Your ears must constantly be burning b/c I know I think of you and your famiy often--and I know I am not the only one!
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Permalink Reply by Bains on
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Mary,
I can not express in words how sad I feel about your loss and everytime I read about one of our angels taken away. Please know that your son has touched more lives than you would ever know. We started this journey 1 year back and every time I look at the pictures of all these kids, I regret not knowing about them before. Our sincere thanks to you for continuing to be part of this community and for sharing wonderful pictures of your son.
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Permalink Reply by Tamara Walters on
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I am so soryy to hear of your loss. Thank you for continuing to support the rest of us still in the battle. God Bless.
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Permalink Reply by Kari on
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Mary,
I cannot imagine and I hope to never go through what you have had to go through. Your son is beautiful and so is you and your family. My son Jared is 7 and has BMD. There is hope in the fact that he can live eternally in heaven as your son is now doing. You and your family are amazing.
Kari Schultz
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Permalink Reply by Kristi Powell on
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Hi Mary, I feel like every time I run into a "name" from the old website, that I have " found my friends"! :)
I remember your story and have continued to pray for all our boys and the struggles each and every one of us go through. I especially remember those that have left us and say special blessing's for their families... I am glad that you are on this board, still with us and supporting us with your knowledge and sharing with us your son! Please know that you are thought of daily and that we are here for you!!
Kristi
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Permalink Reply by Lee Ann Faeth on
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Mary,
Polly has told me so many wonderful things about you and how much Kenny touched everyone he came in contact with. I have really enjoyed seeing his pictures and allowing those of us who are still beginning this journey to see just what a special young man he was. You are a very important part of this community and I am honored to have you still here offering support and insight to us all.
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Permalink Reply by Jerry Dallapè on
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Mary, I have wanted to get in touch with you so many times in the past year, but to do so scares me to death. You see, Ewan has a deletion of exon 44 and your descriptions of Kenny and the physical progression of his symptoms match Ewan's to a tee. Ewan is almost eight years old now and seems to be doing very well compared to most of his DMD peers his age. I know that exon 44 deletions have been linked with increased risk of cardiomyopathy and I just can't believe that there is a very real possibility that we may lose him in the next eight years.
I'm sorry, I really have nothing to add other than that I've felt a lot of your grief as I fear it will be my own one day all too soon.
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Permalink Reply by Mary Sahagun on
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Hi Jerry,
I understand and realize how difficult it must be. I'm sorry it has caused you any added fear. Early on I wasn't aware that exon 44 was linked to heart complications. After the fact I was told that exon 44 was thought to be high risk for heart complications. Still, some will say yes and others say no. I was always aware that your heart, being a muscle, was at risk for heart weakening/cardio problems, so I knew that somewhere down the road this could be a problem. I believe all boys with DMD need their hearts monitored closely regardless of their deletion. I think there is still so much unknown about DMD and we as parents have to be pushy when it comes to getting the right care for our sons. I think starting heart meds at an earlier age makes sense. Don't let your heart be troubled or fearful just stay focused on getting the best care possible for your son. Then you've done your best.
God Bless, Mary
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Permalink Reply by Julie Garcia on
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Mary,
You always speak words of wisdom. I enjoy reading your posts and getting to know your beautiful family.
None of us want to be here today but have found good people like you Mary. I did not get the opportunity to meet Kenny but from all I have heard he was an amazing person with an amazing family. Kenny will be forever in our hearts.
Thank you for staying with us. You are making a difference. Some day we will meet.
All the best to you and your family!
Julie
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Permalink Reply by Jacobs Mommom on
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Mary:
The pictures of your family are precious. Kenny is so handsome in them and looks very happy.
I too was upset when I saw that Kenny's deletion was exon 44 because Jacob's is a deletion of 42 and 43 and needs exon 44 skipped. I've come to realize though thru getting to see the pictures that Kenny was well loved and had lots of friends in his short life and so that is what I wish for Jacob.
You are truly an inspiration to all of us and I love to hear your stories about your family. If it helps you please keep them coming because it helps us too.
Fondly,
Donna
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