"Your baby has Wiskott-Aldrich Syndrome," heard Malia Gregory. She was familiar with the rare gene mutation because her cousin passed away from the syndrome 25 years prior. Caused by a genetic mutation in the Wiskott-Aldrich gene and carried by the mother, one in one million boys are born with the abnormal immune deficiency disorder. Small and only a few weeks old when diagnosed, Emmett was going to show everyone how mighty he could be.
When Emmett experienced abnormal bleeding after his circumcision, and then again when he had a simple procedure on his tongue, doctors knew that something was wrong. Tests proved to be negative for leukemia, a natural assumption for Emmett's symptoms, but then Malia remembered her cousin, who had similar symptoms when he was born. Malia and her husband, Michael, had genetic testing, which showed Malia was the carrier for the mutated Wiskott-Aldrich gene.
Emmett immediately began aggressive chemotherapy to kill his existing bone marrow to prepare a bone marrow transplant. His then five-year-old sister, Eden, was the perfect match and at six months old, Emmett had his transplant. Today, Emmett is thriving with no presence of the mutated gene and his family is looking forward to his first birthday.
ASK Childhood Cancer Foundation has been with the Gregorys from the first day of diagnosis. "ASK has been a true God-send," says Malia. "Over and over again, ASK anticipates our needs as fast as they change. They know what we need before we have a chance to process what's happening and that's a God thing."
The Gregory family was introduced to ASK when Rich Catlett, the pediatric hematology/oncology chaplain, asked if he could pray with them. "Rich is so loving and such a Godly presence amid the chaos," continued Malia. "He's been our advocate and our liaison with hospital staff and he constantly reminds us that we can find peace rather than giving into fatigue and confusion. He represents Jesus for us in everything he does." ASK financially supports the chaplain as a child life specialist and child psychologist positions in the clinic.
As part of ASK's Adopt-a-Family program, Michael, Malia, Breyanna (age 14), Eden (age 6) and Emmett received gifts that filled the space under their tree. "We opened the door and ASK volunteers delivered giant gift bags - bigger than anything I'd ever seen - into our home. We thought this was going to be a sad and mopey Christmas, but ASK made it amazing. Instead, it was our mega-Christmas." Even Eden was overwhelmed by the generous support and said Santa didn't need to come this year because ASK took care of them. "Mommy, did they do this because I was brave and helped Emmett? We don't deserve this. I would have done it any way!" exclaimed Eden. "You can call Santa and tell him he doesn't need to come this year."