This is a sad story, but at the same time, I thought it was inspirational. His pioneering effort and that of his parents is to be admired and it will help others in the future as researchers search for ways to improve and possibly speed up the effects of the treatment.
For six years, Peggy Fulton spoke for her son. She kept track of his bundles of medicine, keeping an itinerary for Jeremiah Dibbern?s physicians. She took him to his weekly treatments and read up on the disease doctors said eventually would rob him of his ability to walk, talk and smile.
Doctors came to rely on her for information about the rare illness, adrenoleukodystrophy, that only a handful of people are diagnosed with each year.
Rarely did the mother leave her son.
But Tuesday, Fulton and Jeremiah?s father, Chris Dibbern, decided it was time to let go. The 14-year-old, who six years ago became the 10th person in the United States to undergo an umbilical cord stem-cell transplant, died at the Clarissa Cook Hospice House in Bettendorf.
?I can?t explain it ? it was a feeling,? Fulton said. ?It grabbed me and I knew I needed to stop, that I needed to let him go. It was the first time in six years I did nothing. I knew if we did nothing, it would set him free.?
Jeremiah left them quickly and on his own terms, she said.
He began having problems breathing Monday. Fulton took him to the hospital, where it was determined he had pneumonia. The doctor told her they would have to intubate him. That would require flying him to Iowa City. After battling for years to bring her son back, she knew it was over.
?We discussed it and said, ?Who are we keeping Jeremiah here for?? ? she said.
For six years, they had fought to bring him back. Within weeks of his diagnosis, Jeremiah went from being an active boy who loved baseball and SpongeBob SquarePants to not being able to move, see things or tell his mom he loved her.
The two parents tried everything they could to bring the blond-haired boy back, but without success.
Shortly after doctors first diagnosed Jeremiah?s disease, Fulton discovered a new treatment at Duke University in Durham, N.C.
Within days, the two were on a plane headed for Duke. After a slew of tests, doctors said he qualified for the treatment in which stem cells from a donated umbilical cord would be injected into his body. They would travel to his brain and repair the damaged areas, stopping the disease.
The transplant was a success. But it didn?t work fast enough.
Doctors told Fulton it could take as long as nine months for the stem cells to work. During that time, the disease progressed and left Jeremiah incapacitated. In the end, there was no way to reverse the damage.
?I know he?s been gone for a long time,? Fulton said Thursday. ?I just took care of his body, and kept hoping I could bring him back.?
After deciding not to intubate their son, Jeremiah?s parents had him taken to hospice, where they were told it could take as long as two weeks for him to die. About two hours later, the entire family, including Fulton, left the room while workers changed Jeremiah?s diaper. He passed away before they had a chance to return.
?He didn?t want us to be there when he went,? Fulton said. ?It was the one choice he had in the last six years.?
For six years, Peggy Fulton spoke for her son. She kept track of his bundles of medicine, keeping an itinerary for Jeremiah Dibbern?s physicians. She took him to his weekly treatments and read up on the disease doctors said eventually would rob him of his ability to walk, talk and smile.
Doctors came to rely on her for information about the rare illness, adrenoleukodystrophy, that only a handful of people are diagnosed with each year.
Rarely did the mother leave her son.
But Tuesday, Fulton and Jeremiah?s father, Chris Dibbern, decided it was time to let go. The 14-year-old, who six years ago became the 10th person in the United States to undergo an umbilical cord stem-cell transplant, died at the Clarissa Cook Hospice House in Bettendorf.
?I can?t explain it ? it was a feeling,? Fulton said. ?It grabbed me and I knew I needed to stop, that I needed to let him go. It was the first time in six years I did nothing. I knew if we did nothing, it would set him free.?
Jeremiah left them quickly and on his own terms, she said.
He began having problems breathing Monday. Fulton took him to the hospital, where it was determined he had pneumonia. The doctor told her they would have to intubate him. That would require flying him to Iowa City. After battling for years to bring her son back, she knew it was over.
?We discussed it and said, ?Who are we keeping Jeremiah here for?? ? she said.
For six years, they had fought to bring him back. Within weeks of his diagnosis, Jeremiah went from being an active boy who loved baseball and SpongeBob SquarePants to not being able to move, see things or tell his mom he loved her.
The two parents tried everything they could to bring the blond-haired boy back, but without success.
Shortly after doctors first diagnosed Jeremiah?s disease, Fulton discovered a new treatment at Duke University in Durham, N.C.
Within days, the two were on a plane headed for Duke. After a slew of tests, doctors said he qualified for the treatment in which stem cells from a donated umbilical cord would be injected into his body. They would travel to his brain and repair the damaged areas, stopping the disease.
The transplant was a success. But it didn?t work fast enough.
Doctors told Fulton it could take as long as nine months for the stem cells to work. During that time, the disease progressed and left Jeremiah incapacitated. In the end, there was no way to reverse the damage.
?I know he?s been gone for a long time,? Fulton said Thursday. ?I just took care of his body, and kept hoping I could bring him back.?
After deciding not to intubate their son, Jeremiah?s parents had him taken to hospice, where they were told it could take as long as two weeks for him to die. About two hours later, the entire family, including Fulton, left the room while workers changed Jeremiah?s diaper. He passed away before they had a chance to return.
?He didn?t want us to be there when he went,? Fulton said. ?It was the one choice he had in the last six years.?