Profiling SMARD: Eli’s Story

**make sure you wish Eli a happy birthday!!**

Eli was born December 10th-2009 a little on the small side.. He was born 5 weeks early and weighed 4lbs 7ozs due to a clotting factor that I was diagnosed with during my second pregnancy! He was very healthy and had a very strong cry! He did great and went straight to the well baby nursey! He was released to go home the same day I was. Eli did all the things normal babies do eat, sleep and potty! Nothing would have prepared us for what happened when he was 2 months. When went for a check up, everything was what seemed normal good check up and vaccines and by midnight he was acting very strange! Sudden episodes of cool clammy pale spells. Nothing seemed to calm him down other than too hold him very tightly against your chest. We decided to take him to our local hospital and he was diagnosed with rsv and pneumonia! He was treated and released 2 days later. We came home and Eli did well for 4 days until the episodes started once again. We then were airlifted to a childrens hospital 2 hours away. He was tested for infantile botulism, which was negative! He had many more test done which led the Docs down the path of SMA or Dejerine-Sottas syndrome(known as infantile Charcot-Marie Tooth) also. All which were negative. We also had a muscle and nerve biopsy and they too were inconclusive.. We were discharged 4 months later with a trach, ventilator, G-tube, due to a paralyzed diaphragm. During this time we decided we No longer wanted to follow up with the first Childrens hospital and was transferred over to UAB childrens in Birmingham, AL. We went for our 1st visit and the neurologist thought Eli was just like a child they had there at UAB who had SMARD. They tested Eli and 3 weeks later his test came back abnormal and he was diagnosed with Smard! I truely believe God led us to the doctors at Birmingham, after 5 months of Numerous test and all negative results! We are truley blessed to have Eli in our lives and thank God each and everyday for the breaths we take and the air we breathe! He and all  SMARD kids are such little inspirations! Thank u Lord for them all!!!

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3 Comments

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3 responses to “Profiling SMARD: Eli’s Story

  1. Thanks for sharing Eli’s story! When I read these stories I can’t believe how similar our experiences are. We went down the whole botulism route as well! It is amazing all the things our kids go through. They are truly blessings!

    Erika

  2. We were thinking Charcot Marie Tooth too for almost two years! WOW, Eli you are incredible and its so nice to hear your story! You are adorable!!! Glad you are doing so great and today is your birthday and we are thinking of you!

  3. Lisa

    Happy Birthday Eli, you little miracle!

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