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Welcome to Logan's website. On October 26, 2004, Logan was diagnosed with MPS II (Hunter Syndrome). He is missing a single enzyme which is responsible for breaking down and recycling long sugar chains (GAGS) within his cells. Without this enzyme, GAGS are building up in cells throughout his body, causing progressive damage. Logan is significantly delayed in all areas of development. His joints are stiff, making it hard for him to move. He is frequently ill with respiratory infections and uses BiPAP and oxygen at night to help him breathe. He has moderate hearing loss in both ears and wears hearing aides. He has hydrocephalus and had a shunt placed in July 2007. He has had many other surgeries and procedures to help control the symptoms of Hunter Syndrome. There is no cure, but in July 2006, the FDA approved the first ever treatment. Elaprase replaces the enzyme that is missing in Hunter syndrome. Logan had his first infusion on October 17, 2006, and he will need weekly infusions for the rest of his life or until a better treatment comes along. Since beginning Elaprase, Logan's breathing has stabilized, his internal organs have returned to normal size, and his hair and skin have become softer. Unfortunately, Elaprase cannot reach the brain and Logan's cognitive abilities have continued to decline. He can no longer speak or sing and he does not know how to play with most toys. He finds joy in his tv and books, and his smile and giggles are contagious. He has brought so much to our lives and we are so happy to be his family.



Journal

Friday, March 11, 2016 8:39 AM CST

A year ago today, I saw my baby boy’s eyes open for the very last time. We knew Logan was dying, and we had called in Hospice a week before. He was sleeping almost all the time, in part due to his stage of life and in part due to the narcotics he needed for pain and to ease his respiratory distress. I walked into his room, and he opened his eyes and reached for me. I went to his side and held his hand, and he grabbed his chewy and put it in his mouth. Logan never did move out of the chewing stage. I put a movie on for him and sat with him for a while, glad for the opportunity to see him awake, but unaware that it was the very last time.
That period of wakefulness lasted less than half an hour, not unusual for those days. When he fell asleep again, I went to the living room and pulled out our video camera. I had gone through the pictures and videos on my computer and wanted to know what we had on videotape as well. I knew that someday soon we were going to want to put together a slideshow of Logan’s life.
Watching videos is bitter-sweet when you have a child with a degenerative disease, and it is absolutely heart-wrenching when that child is in his last days. The videos brought tears and smiles as I watched my baby boy not yet cognitively affected by his disease. I watched in no particular order, so I had been through a few tapes of his baby and toddler years before I reached for the one of his birth.
I have never had a moment in my life as poignant as the one that was to follow. I watched the video of my newborn son taking his first breaths and crying his first cry. I saw him: the tiny, scrawny, and bright red creature I had brought into this world. I sobbed as I remembered that moment and the hopes and dreams I had for his future. With those memories still screaming in my mind, I walked back to his room to check on him. I found him changed from less than an hour before – struggling to breathe through wet lungs. In that short walk down the hallway, I had traveled from my son’s birth to his death. I grabbed the supplies that I needed to try to help him, but I knew even as I did that nothing was going to help. Logan had transitioned from end of life to actively dying. Videos abandoned, I turned my focus to the present. I stayed by his side for the next four days, holding his hand and talking to him as he fought, then accepted the release of death.

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E-mail Author: rpiefer@stny.rr.com

 
 

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