After five years of trying to get pregnant and confounding doctors as to why they weren’t able to, Abbey and Robert decided that they had had enough stress and disappointment and decided to stop trying to conceive. When Abbey suddenly got pregnant, the couple was overjoyed and considered William their “miracle baby”.
In June 2014, William was born weighing 8 lbs 9.6 oz. and at first, developed just like any other baby. Since Abbey has a degree in special education, she was aware of the milestones that William should be reaching by a certain time, and he seemed to be exceeding those norms.
When William was three months old, however, his parents noticed sudden and alarming differences in his development. His weight gain slowed down dramatically – he stopped growing at about 14 lbs. His muscles and joints started to stiffen, and his mother noticed that his arms and legs were rigid. His parents took William to a pediatrician who thought William might have cerebral palsy (CP). Abbey did not believe this to be true, as she was aware of CP symptoms and William’s didn’t seem to fit them. They found another pediatrician who immediately referred them to Primary Children’s Hospital in Salt Lake City for a neuro evaluation. CP was quickly ruled out but the cause of William’s symptoms was still a mystery.
William was eating just enough not to become dehydrated until he was five months old, when he quit eating completely. He wouldn’t even take Pedialyte anymore. William was finally admitted to Primary Children’s Hospital. After several tests and an abnormal MRI, it was presumed he had a rare genetic disorder. The disorder is a type of leukodystrophy called Krabbe Disease, which destroys the protective coating of nerve cells in the brain and throughout the nervous system. The family was told that William would not live past his second birthday. Krabbe’s can only be treated before symptoms begin. The family was told there was no treatment available for William because he had already started to show signs. Doctors said William would eventually die from not being able to breathe on his own and that he would go deaf, blind and have seizures.
Robert pleaded with the neurologist to find a doctor who would perform a cord blood transplant. The doctor checked Duke, Minnesota and Salt Lake but they all said it was too late. However, Abbey and Robert refused to be told “no”. Abbey’s best friend Katie, who is a registered nurse, found a doctor in Pittsburgh that specialized in rare leukodystrophies including Krabbe. When Abbey called, they said William was most likely a great candidate because his disease was progressing so slowly. A successful cord blood transplant would not cure William, nor will it help any deterioration that has already taken place, but it does stop the progression of the disease and would keep any skills that he has from the time of transplant intact.
In December 2014, William’s family moved from Utah to Pennsylvania in order to prepare for a cord blood transplant at Children’s Hospital of Pittsburgh. He can’t move very well, but he still coos, smiles at strangers, laughs, and even gets irritated at Abbey when she won’t stop giving him kisses.
William’s family is aware that the chances of success are small and the risks of a transplant are scary, but transplant is their only hope. In order to raise money for the immense medical and living expenses they will incur during William’s treatment, Abbey and Robert have decided to team up with The Bone Marrow Foundation in order to raise much-needed funds that will give William a second chance at life.
Or you can send a check, payable to The Bone Marrow Foundation.
Be sure to include William’s name on the front of the check.
Send check to:
The Bone Marrow Foundation
515 Madison Avenue, Suite 1130
New York, New York 10022