Wyatt's story
Wyatt’s story.....
Our 5th child weighing 8 pounds 7 ounces entered the world, in not the typical way. After 40 minutes of labor that came on without ANY warning, Wyatt was delivered on our dining room floor by local paramedics. His first 5 months went by so fast. Typical baby stuff sleeping, eating, you get the picture.
Then at a 5 month check up our doctor suggested we could to Children’s Seattle to find out why he wasn’t putting on weight. (At that point he was 12 pounds 7 ounces, less than 5%) The GI doctor we went to see ran all the normal GI tests that they do. He added allergy tests and on a hunch a CK level.
To make a long story short, Wyatt’s CK was 29,000, so GI referred us to Genetics. After months of tests, we got a call to come to Children’s ASAP. A counselor gave us the results and then sent our family into a tail spin of emotions.
Step 1 CK levels on our other 3 boys. Even without CK levels we were relatively certain our older boys (12 and 9) were in the clear. But our younger son, age 4, was more of a concern. Thankfully, and by luck (for the lack of a better word), all three boys have CK levels in the 100's. I still wanted to be certain, but I was assured their CK’s would be up if they had DMD.
Step 2 was for me to have a DNA test done. We didn’t get so lucky there, turns out after 5 kids I find out I’m a carrier! 37 years old, you think my preious doctors would have figured that out before now.
Now, up to Step 3 my daughter and Mom are getting DNA tests done on May 13, 2009.
The doctors are telling us that there is nothing they can do, right now. Because he is so young, we’ve 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, wait and see” kind of people. Our DMD doctor told us that he has never seen a kid as young as Wyatt with DMD. So we are feeling kind of isolated. But hopefully sharing our story on this site, will connect us with other families who understand what we are going through. 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.
Our 5th child weighing 8 pounds 7 ounces entered the world, in not the typical way. After 40 minutes of labor that came on without ANY warning, Wyatt was delivered on our dining room floor by local paramedics. His first 5 months went by so fast. Typical baby stuff sleeping, eating, you get the picture.
Then at a 5 month check up our doctor suggested we could to Children’s Seattle to find out why he wasn’t putting on weight. (At that point he was 12 pounds 7 ounces, less than 5%) The GI doctor we went to see ran all the normal GI tests that they do. He added allergy tests and on a hunch a CK level.
To make a long story short, Wyatt’s CK was 29,000, so GI referred us to Genetics. After months of tests, we got a call to come to Children’s ASAP. A counselor gave us the results and then sent our family into a tail spin of emotions.
Step 1 CK levels on our other 3 boys. Even without CK levels we were relatively certain our older boys (12 and 9) were in the clear. But our younger son, age 4, was more of a concern. Thankfully, and by luck (for the lack of a better word), all three boys have CK levels in the 100's. I still wanted to be certain, but I was assured their CK’s would be up if they had DMD.
Step 2 was for me to have a DNA test done. We didn’t get so lucky there, turns out after 5 kids I find out I’m a carrier! 37 years old, you think my preious doctors would have figured that out before now.
Now, up to Step 3 my daughter and Mom are getting DNA tests done on May 13, 2009.
The doctors are telling us that there is nothing they can do, right now. Because he is so young, we’ve 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, wait and see” kind of people. Our DMD doctor told us that he has never seen a kid as young as Wyatt with DMD. So we are feeling kind of isolated. But hopefully sharing our story on this site, will connect us with other families who understand what we are going through. 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.
Comment
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Comment by Wyatt's Mommy, Melissa on September 16, 2009 at 10:05pm
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Marcie, thanks for sharing your son's amazing story. When Anthony (my asperger's son) was younger, everything that could happen in our family happened to him. Broken bones, seizures, ambulance rides, asthma, everything. All of that has really helped me deal with Wyatt. We used to say everything was wrapped up in Anthony. It's hard to have 2 kids with special needs, very different special needs. I'm adding you as a friend, because not only will you be a great person to talk about Wyatt's DMD with, you will also be a great person to discuss Anthony's Aspergers.
I truly feel love and understanding for the amazing women I have met on this site. I'm honored to add you to that list.
Have an outstanding evening.
Talk care
Melissa
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Comment by marcie macek on September 16, 2009 at 9:21pm
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I also have a child that was diagnossed young. 16 and a half months old with DMD. 2 1/2 officially with autism. A mother knows.. I knew something was wrong with my son but never dreamed it would be a disease that does not run in our family or come from me being a carrier. I agree with Carolyn. Prepare for the worst expect the best. Great words... but for me... live day by day but be aware. Sometimes that is not so good but at this day in the game.. it works. my son is 14. My son also did all the therapies there were to offer. He did quit walking at eight but with him having autism.. it may not as been as theraputic as it would be for a normal child, however. My son is and was always obsessed with swimming. Started swimming at 3 and never quit until this summer. He still goes in the water but i have to be there unlike the past years. I could watch from the side lines. It really was an amazing thing to see that my son could swim (float) around the pool completely independently but now walk.. AMAZING!
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Comment by Carolyn Greathouse on April 28, 2009 at 1:54pm
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My son was diagnosed at 2 1/2 with DMD. I have been aware of DMD since I was 14 years old. My brother had it. I was told I was not a carrier, but the test back when I was tested for elevated CK. It turns out that about 20% or so of carriers have no elevated CK. I had Matthew when I was 38 years old. Matthew is my only child. Well guess what I am a carrier, but DNA testing and having a son and brother with it confirmed it. My family has been fortunate because out of 9 kids only 2 of us got the DMD gene deletion. My mother died before I have my son, so she never knew she was a carrier. I believe knowledge is power!!! I also believe early diagnosis can help slow down the progression of the disease. I believe in you case you should have a lot of hope. My son is still walking at 13 year old, my brother stopped walking at 9 years old. I believe in stretching and Physical Therapy as soon as the diagnosis is confirmed. I also believe in encouraging a child with DMD to try new things, but take precautions. My son has done through special needs leagues, Tball, soccer. He has also had horseback riding therapy, physical therapy, water therapy, special needs swim lessons and adaptive physical education at school. In addition, I do not push it if he has decided to give it up. There is hope and remember that. I believe in 'Prepare for the worst, expect the best". In other words, try and develop a plan for the worst, but live for the best (excellent quality of life) I will pray for you and wish you hope and strength.
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Comment by Sindy Boldizar on April 21, 2009 at 4:12pm
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Your story also sound similar to mine. Gregory was eating but not sitting up at nine months and not walking at 1 1/2. He had blood test done and was diagnosed at 2 1/2 with DMD. I was tested and am not a carrier. It does not run in the family. The waiting is the hardest part. we went through months of testing and everything came up negitive then we had to wait months for the results to come back. I found sharing my story and talking about it helped me through the waiting and not knowing. I will be here for you if you need to chat..SINDY
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Comment by Perlita & Gordy Hains on April 20, 2009 at 11:46am
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Wow - Your story sounds very similar to mine. There is ALOT of HOPE coming for our beautiful boys. Our 3rd son Levi was "officially" diagnosed this past Friday but we've known since Xmas eve about DMD. It is more than difficult but their is ALOT of light at the end of our tunnels. Please feel free to contact me WHENEVER you feel up to it. I would be delighted to give you teh HOPE that you & your family need:) xoxo perlita
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