Miller Dieker Syndrome

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Our middle son, Ryan, has Miller Dieker Syndrome.  We found out the day after he was born that he had Lissencephaly, and three weeks later that he had MDS (Miller Dieker Syndrome).  He has a deletion of his 17th chromosome, and his brain is completely smooth.  The condition is very rare, in fact, only 11.7 in One Million have MDS.  He has really been a fighter!  He is 10 now and we were told that he would most likely not live past the age of 2.  

Ryan has seizures, a feeding tube, respiratory problems, a trach, lots of machines to help him in his day to day life, and is completely dependent for all of his care.  He has a full time nurse that helps us with his care.  He uses a nebulizer, The VEST (Airway Clearance System), a cough machine, oxygen (at times when he is sick), Trilogy Ventilator, and a suction machine.  He is on many medications and also has many therapies during the week to help him stay loose and push him to learn in his own way.  He uses a Tobii eye gaze to communicate/play. In January of 2016 we decided it was time for him to get a trach because we could no longer manage his secretions well at home and he was getting sick often.  It was a great decision for him and has greatly improved his quality of life. He uses a speaking valve during the day and is on the ventilator at night when he sleeps.

He is such and fighter, and we are truly blessed to have him in our life!

Ryan has an older brother and a younger brother that are both perfectly normal.  We had genetic testing to see if my husband or I were carriers of MDS and we were so glad to find out that we weren't.  His brothers love him so much!

Here he is when he was just a few weeks old!  He was born prematurely at 34 weeks gestation and weighed 4lbs. 4oz.  He was so tiny!

If you have any other questions about Ryan and his special needs, you can contact me at or find me on facebook and send me a PM.

If you also have a child with ANY kind of special needs, you can join my group called Beyond The Diagnosis where I offer support to parents of children with special needs.

Click HERE to join!

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