Young teenager with Duchenne passed away...
I heard that a 13 yo boy with Duchenne passed away just recently but I couldn't get any details. I'm very saddened by the news and I would like to know more. Anytime a boy passes away from this disorder it puts me in a depressed state especially when they are younger because it's not suppose to happen so quickly. If anyone has any information please post it here. I'm so sorry, I can't imagine what this family is going through. If anyone knows this family please send my condolences and please let me know who they are so I can include them in my prayers. Thank you.
Replies to This Discussion
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Permalink Reply by Lori Ware on
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All I know is he was from Houston, TX and his name was Stephen. But no one in Houston that I have spoken with knows any more....I heard yesterday and I think he passed away on Saturday, but am not sure about that.
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Permalink Reply by Laurie Paschal on
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Yes, this was a boy in my town. He lived across the street from a friend of mine. I never did get to meet him, so I don't have any information on his health other than he'd had a rough year. There is a viewing tonight. I'm not sure when the funeral is, but I don't think I'll be able to bring myself to attend. If I get other information, I'll be sure to pass it along. His name was Stephen, and I'm hoping to have some contact with his family in the future. I'd very much like to add his name to my fundraising efforts and carry a picture of him with me when I run my marathon.
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I wanted to add the email I received from my friend on Saturday.:
Laurie,
Sadly I write this to you just to inform you that a neighbor boy with DMD has joined Jesus and is now smiling, laughing, and playing in his arms. Stephen has had a tough year and is now comfortable again. Hug your
kids today and pray with us for the strength of his family. Eddie went to school with Stephen last year and Christopher was with him this year. We will miss Stephen and miss saying hi as he rode by us grinning in his
electric chair as he passed us. His chair could go quite fast. :-) Laurie, we pray for a cure!
Warmly,
Kathryn
To follow is a beautiful note from Stephen's grandma letting us neighbors know of the sad news.
Dear Friends & Neighbors
I know that at least the neighbors in Del Lago Estates who witnessed the early morning arrival of EMS yesterday are wondering how Stephen is. It seems the ambulance service is an all too often occurrence at the Stewart home. We are very saddened to relay that Stephen passed away yesterday morning. His little body was tired and weak, and his heart simply stopped beating. He passed very peacefully and so we find some comfort in knowing he was not afraid or panicked in his final moments. His parents, Bridgett and Jeremiah, aided by his nurse on duty, fought hard to bring him back. Although we have known for years that we would some day have to let him go, none of us were yet ready for that day to come. Stephen was a tough little
man and he fought a very difficult battle. He brought more joy to our lives in his 13 years than anyone ever has. He taught us so much about love, compassion and giving. We are grateful for every single day we had him.
Bridgett has a very difficult time ahead of her while she learns to adjust her life--so much of her time was dedicated to his constant care.
To all of you--those who helped us with our Muscular Dystrophy fundraisers, those who have known and loved him along with us, and for all of you who showed acts of kindness--whether it was a smile in passing, words of
acknowledgement or visits when you most likely had many other things you needed to be doing--THANK YOU! You made a difference in his life!
We will meet with Metcalf Funeral Home later this morning to make his final arrangements. I wanted to personally call many of you. I just can't find my voice right now without crying and you would not be able to understand
anything I was trying to say. My heart is broken and, while I know he is in a better place now where his
little body is whole and he can finally walk, run, jump and play--I am selfish and I wanted to keep him here with me.
Stephen's Mimi
Debby
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Permalink Reply by Heidi Miller on
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I don't know this family and am alos very saddened by this horrible news. I knew a young dmd boy who passed away at 13 due to problems with his heart. He sufferred several months with CHF (congestive Heart Failure). At this time, the doctors said this was very rare to see a dmd boy with heart problems.We now know this is not true at all and heart problems are very common in our boys. I would suggest allparents of dmd boys have a baseline echocardiogram done early on so there is something to compare with in the future. When our boys are young, lets say beofre age an echo once a year is good. When they are 13 and older, an echo should be done every 6 months. My son is now 23 and he has an echo every 3 months. There are cardiac meds that can be given to help the heart not work so hard. LIke I stated, Idon't know what this poor boy died from, but just wanted all to know the hrrid reality of heart conditions in our sons. Heidi
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Permalink Reply by Joel Rhodes on
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Thank you for sharing. I know me and my wife are sending our thoughts and prayers to this family.
Also, I have shared this on facebook, and asked for thoughts and prayers to be sent towards the family. I am also hopeful that this will make my friends and family more aware of how awful this disease really is. I know for me, it is hard to have family and friends understand how horrific this disease is sometimes, because they see my son who is a jolly, playfull, exburhant 3 year old, and they wonder how anything is wrong with him. They have a hard time understanding that from a physical standpoint that these next few years may be his most healthy of his life.
I know that I am going to go home tonight after work and make sure I give extra hugs (I always give hugs, but I think tonight it will be extra to the point they say stop daddy :-)) to all my boys tonight, but still feel extreme pain for the family that is going through this pain right now, and wish them strength to move on with what needs to be done.
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I don't know if it helps families or friends understand, but Seph had an article written about him in my alumni magazine. PPMD put a link in their newletter as well, but if you want to share the link, feel free. www.du.edu/magazine I think the story mimics many on this site..Seph is just a vehicle to tell it....
Lori
MarcosDad said:Thank you for the replies.
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Permalink Reply by Jenny Garofalo on
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HI All,
I hate that we have to call him a teenager, he was only 13. I am so saddened by this whole this thing as I am sure everyone else is. We are running in the 1/2 at Disney this weekend. I have spoken to Laurie about honoring Stephen. I have cut up about 100 strips od red fabric that if anyone wants they can wear on their sleeves like an armband the day of the 1/2 or full. I will bring them to the pasta dinner and we wil spread the world without alerting the children, both young and old. God Bless All
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Okay, I feel kind of stupid now. After reading the obit and on the drive home yesterday, I realized I have met Stephen's grandmother and father.
My friend that lives across the street from them has always told me that there was boy with DMD across from them. I never had the opportunity to meet him and never questioned that he had DMD. Well, back in August, my husband and I had dinner at his grandmother's restuarant (his dad is the head chef). We saw that they were going to be hosting an event to raise money for MDA and asked them about it. Debby told us of her 13 year old grandson. He had Pompe, not DMD.
I had no idea that they were the family living across from my friend until yesterday. I'm sorry if I caused any undue grief for everyone who's heard of this. I was just going by the information my friend had given me. It is still a horrible and sad passing, but now that kind of explains his age and difficulties.
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Permalink Reply by MarcosDad on
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Pompe disease? Must have been late onset since they don't usually make it past 1 year old. Still an MD which they can treat now if caught early. Thanks for the update, that explains the quick cardiac involvement, however, we still need to be vigilant about our boys because some DMDs progressive faster and effect the heart and lungs at different times, there seems to be no rhyme or reason to it. Doesn't matter what disorder, children should be burying their parents, not the other way around, of course, DMD just resonates with us.
Laurie Paschal said:Okay, I feel kind of stupid now. After reading the obit and on the drive home yesterday, I realized I have met Stephen's grandmother and father.
My friend that lives across the street from them has always told me that there was boy with DMD across from them. I never had the opportunity to meet him and never questioned that he had DMD. Well, back in August, my husband and I had dinner at his grandmother's restuarant (his dad is the head chef). We saw that they were going to be hosting an event to raise money for MDA and asked them about it. Debby told us of her 13 year old grandson. He had Pompe, not DMD.
I had no idea that they were the family living across from my friend until yesterday. I'm sorry if I caused any undue grief for everyone who's heard of this. I was just going by the information my friend had given me. It is still a horrible and sad passing, but now that kind of explains his age and difficulties.
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Marcos,
If I remember correctly, he was diagnosed early and not expected to make it, but far exceded all expectations. He was also on a new drug that I remember being discussed briefly at one of our conferences.
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