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OREM — Faced with almost unbelievable adversity, a Utah County family has found a way to not only survive, but grow stronger.
More than one in a million — those are the chances of being born with a rare and terminal genetic disease called leukodystrophy. Yet three of Aaron and Emily Campbell's five children have been diagnosed with the disease.
Having lived all over the world, the Campbells and their kids are international citizens. They've called countries like South America, South Africa and India home — to name a just a few.
Our faith plays a huge part of it. We knew that no matter what happened, everything was going to be OK in the end. Our experiences being kind of isolated — traveling around the world — really brought us together as a family.
–Aaron Campbell, father
Their adventures have taken them to great heights, including the pyramids in Egypt and the mountains in Chile. But they now have a different kind of challenge to conquer.
Bone marrow transplant days at Primary Children's Hospital bring celebrations. May Campbell's brother Eli just donated his marrow in an attempt to save his sister's life.
"He gave me the blood," she said. "I'm going to love (him) for the rest of my life because of it."
Eli said he doesn't feel much different than before.
"When I woke up, I was just like an ordinary kid except I was in a different room, different clothes and very sleepy," he said.
The transplant also happened to take place on May's 14th birthday. A perfect gift from a brother who loves her.
"I will be very thankful for this day until I die," she said.
At the time of the transplant, May had been at Primary Children's Medical Center for a week. May's older sister Tori is staying in a room just a few doors down. She'd been at the hospital twice as long as May.
"Throughout the time period I've done nothing. Literally nothing," Tori, 16, said. "You can't get up out of your bed when you're connected to that."
"That" is Tori's life-saving bone marrow, which her 12-year-old sister Emma donated.
Metachromatic leukodystrophy (MLD) is a genetic disorder that affects nerves, muscles, other organs, and behavior. It slowly gets worse over time. You must get a copy of the defective gene from both your parents to have the disease. Symptoms include:
- abnormal muscle movements
- behavior problems
- decreased mental function
- difficulty walking
- feeding difficulties
- frequent falls
- inability to perform normal tasks
"(The doctor) told me I had the match for Tori," Emma said. "I'm excited because I get to help her."
Tori's bone marrow has engrafted, which means it's working.
"I could seriously go out to the mall right now and go shopping," she said.
That is music to her parents' ears. Their family nightmare began two years ago when Tori, an excellent student, began struggling in school. At the time the family was living in Uruguay. They soon returned to the U.S.
"She was having more and more memory issues," said Aaron. "Her test-taking skills dropped. She started having some coordination issues — slipping and falling."
The disease — metachromatic leukodystrophy or MLD — is genetic and rare. Usually diagnosed in infants or young children, it manifests itself with severe and rapid progression of nerve damage, affecting the mind and speech process and muscle control.
After an MRI showed brain damage in Tori, May was diagnosed one week later. Then during genetic testing of the other three, the doctor delivered another blow — 7-year-old Ike also has the disease.
"It occurs in less than one in a million," said Dr. Michael Pulsipher with PCMC. "They have a unique variant where it happens to teenagers."
The good news is that there is hope to halt the process for the three Campbell children.
"The infantile form, not even bone marrow transplant can help. But this teenage form, many of the children who undergo bone marrow transplant can be helped," said Pulsipher.
It's awful, but we have found so much beauty in it. To really focus on what's important. To see the goodness in other people as they support us. To see how strong our own kids are as they go through these very hard things.
–Emily Campbell, mother
Ike has undergone tests for his bone marrow transplant. Dr. Pulsipher will use infant cord blood for him.
It would be difficult for anyone to imagine how you conquer this fear of losing your children.
"Our faith plays a huge part of it," said Aaron. "We knew that no matter what happened, everything was going to be OK in the end. Our experiences being kind of isolated — traveling around the world — really brought us together as a family."
Mother Emily said the family has found a way to see the good in all the heartache.
"It's awful, but we have found so much beauty in it," she said. "To really focus on what's important. To see the goodness in other people as they support us. To see how strong our own kids are as they go through these very hard things."
Combining faith, hope and good cheer, the members of the Campbell family feel confident they will get through whatever comes.
"This whole thing that we're going through has really strengthened lots of things between us," Tori said.
