Profiling SMARD: Dakin’s Story

Hi all!  Welcome to Bridging the Gap!  I am hoping this site will help to reinforce our community as well as helping with advocacy, so in that vein  I Mindy thought it might be fun to get to know our kids.  Thusly, here is Dakin.

Dakin was born on Halloween 2007.  After a perfect, uneventful pregnancy, he was born at 7 lbs, 9 oz, with a good cry.  He was a mostly perfect baby–he ate and slept as well as any newborn does…until about 2 months of age.  Then the weirdness began.  He started decreasing his eating, and gagging horribly when we would pick him up.  After repeated visits to the pediatrician, we were told he had reflux.  Eleven days after the last visit, Dakin wokr up very lethargic.  We managed to get him in at the pediatrician’s, and he was immediately rushed to the ER, and from there lifeflighted to Dallas, where we stayed for 2.5 months. 

None of the multiple doctors we saw knew what was wrong, other than they could see his diaphragm was not moving as much as it should.  They advised tracheostomy, saying he would ‘grow out of it.’  We went ahead with the surgery, proceeded to Our Children’s House at Baylor and learned to care for Dakin’s many needs.  While there, Dakin’s amazing pulmonologist thought it might be worth one last trip to see Dr. Susan Iannaccone, a world class neurologist.  We did, and she suspected SMARD.  At the time, SMARD testing was not available in the US, and so after being tested, we were released home to wait.  Three months later, we received notification that Dakin’s results were abnormal.  In October, a month before Dakin’s first birthday, he was finally officially diagnosed with SMARD, though the final and definitive test results did not come back until a year after the initial testing.

Flash forward.  We have had the amazing opportunity to watch Dakin learn and grow in ways we feared he would not be able to.  We have helped advocate for SMARD kids through helping forward ‘regular’ SMA research.  We have had more fun and joy than we ever could have imagined.  Dakin is light and laughter and joyfulness, and we are lucky to have him.

 He has PT, OT and Speech, as well as 2-3 times daily breathing treatments with Xopenex and Atrovent.  He takes a small dose of Atenolol for a higher-than-normal heart rate, but other than that, nothing.  We do trach care daily and trach changes weekly.  Dakin spends time in the stander 5 days a week, and I think it has done amazing things for him.

So anyway, that’s our little one!!  We are very much looking forward to meeting all of you! 

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4 Comments

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4 responses to “Profiling SMARD: Dakin’s Story

  1. I love that! Its so good to hear about other “journeys” with smard!

  2. Love to hear Dakin’s story! Thanks for setting up this site! Our kids are amazing aren’t they? 🙂

  3. Lisa

    Devon,
    I’m sorry our lives intersected in this manner, but I’m grateful that your story was out there for me to read when I sat, for months, in a NICU room waiting for Silas to be diagnosed. Seeing Dakin’s face illuminating with happiness staring back at me on my lap top (and Madison’s) told me that if Silas had smard that at least it would not strip him of his happiness.

    Your family gave me the confidence to know that John and I could take Silas home and give him a life where he felt loved and adored, just like any other ‘healthy’ child. Dakin’s story did not tell me, but it showed me, that children with smard are just like every other child, but for the fact that their diaphragms are paralyzed and they have muscle weakness.

    I sincerely thank you, Devon, you truly are the best mother and my inspiration.

  4. John Winskill DDS

    Hello;
    My wife Jan and I have a son Christopher who is 21 years old and has been on a ventilator since 3 months of age. He was officially diagnosed with SMARD last year as part of an NIH study.
    His loss of muscle tone progressed until about the age of three to four years when he leveled off where he is now, unable to move below the chin.
    [He graduated from high school last year having never been on campus – but that’s another part of the story.}
    Christopher has been an unbelievable challenge and a remarkable blessing.
    We have been at this a long time and have alot of thoughts on it but I seem unable to make contact with anyone.
    I would love to chat with any parents involved in this “adventure”.
    I am 60 and Jan is a few years younger so we are not the most tech savy people out there. I am not certain I can figure out this site so feel free to contact me via email just in case I can’t figure out how to get back to and use this site.
    Google me under John C Winskill DDS or email me at: winskilldds@narrows.com

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