Logan

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Logan has a brilliant, goofy, and happy personality. He wakes up every morning with a smile and determination. He always likes to see people smile and laugh and he has always been said to be the social butterfly of his therapy class. But before Logan was able to blossom into such a wonderful joy to his family, he went through a very trying period.

Logan was born without breathing or moving on February 6th, 2012 after a C-section. He was rushed to the NICU and put on a cPAP to help him breathe. After weeks of testing with no results, Logan was transferred to UNC Children’s Hospital NICU. There he had muscle biopsy, MRIs, EMGs, Neurology consultants and genetic consultants before they finally was able to diagnose him at seven weeks old with x-linked Myotubular Myopathy (XLMTM). XLMTM is a fatal genetic disease in which it primarily affects muscles involved in motor skills and is caused by mutations in the myotubularin gene (MTM1). This particular gene is located in the X-chromosome and occurs mostly in males. XLMTM usually causes severe muscle weakness and decreased muscle tone, including difficulties in breathing. There are no curable treatments available for XLMTM but there are supportive care options.

Logan had been sent home with instructions that his family enjoy their time together with him because they were not sure how long he would be with them. The family recalls being prepared for the worst and were scared to take him home. And as anticipated, in late July of 2012, Logan developed pneumonia in one of his lungs requiring two hospitalizations. After the recovery from the pneumonia, things took a turn for the worse. Logan started to sweat profusely and his breath became shallow. Both of his lungs had collapsed. Logan was intubated and put on ventilation to help his breathing. After two weeks of failing to have Logan off of the ventilator, it was decided that he needed to have a tracheostomy procedure. Tracheostomy (trached) is a surgically created hole in the front of your neck and into the windpipe to create an air passageway to help one who has a hard time breathing.

After the tracheostomy, Logan was able to go home after spending six weeks in the hospital. Logan has nursing every day and night. He is trached, on the ventilator, has a feeding tube, suction machine, humidifier, neb machine for breathing treatments, and lots of medical supplies. Ever since his return to home he has been stable and has even shown some strength gain since the tracheostomy and has even been able to come off the ventilator for periods of time during the day. Logan has made a considerable amount of progress through an early intervention, special needs school near their home. Logan’s family feels truly blessed with the bright personality Logan has.

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