A condition characterized by a developmental defect of the brain (partial deletion of chromosome 17), known as lissencephaly (smooth brain). The exterior of the brain which normally has many layers of folds and grooves, is abnormally smooth. These brain malformations cause severe intellectual and developmental disabilities, seizures, abnormal muscle stiffness and weak muscle tone, feeding difficulties, and distinct facial features (a.k.a. CUTE!)
Common secondary medical issues include failure to thrive, feeding/swallowing difficulties, acid reflux, and respiratory complications (ie. aspiration pneumonia). Often a gastrointestinal tube is placed for feeding. Pneumonia seems to be the leading cause of death and usually within the first few years of life.
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| Happy boy on a wedge in a sling to help with support and acid reflux |
Our Story: Jaron was born with MDS in March 2010. He has a g-tube, infantile spasms (seizures), asthma, moderate/severe hearing loss, cortical vision impairment and very low tone (no head control). Developmentally, he functions at a 3-5 month old level. He is so very precious to us and our goal is to give him the best possible care, so that he can have the abundant life that God created him for!
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| Mic-key Button feeding tube |
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| Puffy Prednisone steroid cheeks |
Doctor's said he would not live a full year. We just rejoiced on his first birthday and will continue to cherish every day we have!
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| One of many EEG's |
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| Praise God! One whole amazing year! |
And here we go, year # 2! Lord willing, I will get to update this page for many years!
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| Happy in his Tumble Form chair |
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| Kid Kart Xpress, a great wheelchair |
Guess who's 3?!
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| Hitchin' a ride, Hannah and her best buddy |
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| Happy Easter 2013 |
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| Big boy in his stander |
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| Jaron's BFF, Auntie Lissa |
We're so proud of you, Jaron! You have been such a special part of our lives and made us appreciate all the small things! We love you, baby bear :)
Some of our new MDS friend's blogs:
Some LINKS for other MDS families:
1 comment:
Aww, I’d have to say, he’s one cute little boy! Keep going, Jaron!
~Aidyl
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