Zachary and Collin – Crohn's Disease

Bond of Brothers

At age 6, Zachary began having persistent abdominal pain, diarrhea, and vomiting.

After suffering from these symptoms for two months, he saw a doctor from UPMC Children's.

The doctor from the Inflammatory Bowel Disease Center at UPMC Children's Hospital of Pittsburgh, immediately diagnosed Zachary with Crohn’s disease.

Zachary’s mother was already familiar with Crohn’s disease.

Doctors diagnosed Zachary’s half-brother, Collin, with Crohn’s at age 3. Collin’s condition had remained fairly well controlled with medication.

But for Zachary, it was a different story. His symptoms continued recurring with several different medications doctors had prescribed.

Zachary's Health Begins to Decline

Zachary had an ileostomy, where surgeons placed a pouch to catch all of his digestive food since his system wasn’t working properly.

Shortly after the surgery, a cascade of complications ensued that brought him to the emergency room at UPMC Children’s Hospital:

• A sudden drop in blood counts.
• An abscess in his thigh.
• Psoriasis.
• A fever and severe rash on his legs.

Zachary’s condition suddenly deteriorated while in the emergency room. ER doctors admitted him to the Pediatric Intensive Care Unit (PICU) with what appeared to be septic shock.

The care team in the PICU placed Zachary on a ventilator and he clung to his life.

Lab testing finally found the culprit for all these symptoms.

Zachary had a genetic abnormality that prevented his body from producing a protein called XIAP. This affects only 4 percent of male patients with pediatric-onset Crohn’s disease.

His only chance at surviving was a stem cell transplant.

The Result: Stem Cell Transplants for Two Brothers

Doctors admitted Zachary to Children’s in April 2016 to begin pre-transplant conditioning. He received two weeks of treatment, and then had a transplant of cord blood stem cells.

Doctors were concerned if the transplant would be a success, but Zachary did remarkably well.

Just 11 days after his transplant, his donated stem cells had begun to grow. And. they were making healthy blood stem cells that his care team could see in his blood — a crucial post-transplant milestone.

While Zachary’s mother waited for news of her younger son’s transplant, her other son was on his way to UPMC Children’s emergency room. He had a severe attack of abdominal pain, diarrhea, and vomiting.

Transplant doctors confirmed that Collin had XLP2, caused by the same genetic abnormality that affected his younger brother.

Collin also received a transplant of stem cells derived from umbilical cord blood and had great success with his transplant.

Now, with both boys past one year post-transplant, they have done so well.

They've been able to stop taking all medications for both immunosuppression and Crohn’s disease. And, they were happy to return to school this year after being in cyber school during their treatment.