An umbilical cord blood transplant has halted the spread of Dylan’s disease. With this new treatment, researchers are closely monitoring Dylan’s long term health and wellness.
Adrenoleukodystrophy (ALD) – Dylan's Story
There are many traits we pass down to our children. When people see new babies, they often say to the parents, "he has your eyes," or "she has your smile." Unfortunately, for a young family from South Carolina, they found that beyond their son’s beautiful eyes and smile; Dylan had also received a mutation of an abnormal gene resulting in a life-threatening disease called Adrenoleukodystrophy.
Watching and Waiting
Adrenoleukodystrophy (ALD) is a genetic disorder that causes damage to the myelin sheath, an insulating membrane that surrounds nerve cells in the brain. People with ALD accumulate high levels of saturated, very long chain fatty acids in the brain because they do not produce the enzyme that breaks down these fatty acids in the normal manner. The most common symptoms are usually behavioral changes such as abnormal withdrawal or aggression, poor memory, and poor school performance. Other symptoms often include visual loss, seizures, trouble with speech, swallowing and coordination, deafness and fatigue.
Dylan’s ALD was diagnosed at the age of 6 but he didn’t display any of the diseases common symptoms. In fact, he excelled in school, had a great love of sports, and a seemingly natural athletic ability that always amazed his family. Under the watchful eye of doctors, he underwent routine MRI’s to monitor the disease which remained stable for nearly two years. However, in May of 2007, doctors discovered a significant change in Dylan’s MRI and it was clear that action needed to be taken immediately.
Time for Action
The University of Minnesota Cancer Center has long been a pioneer in the field of blood and marrow transplants. In fact, the first successful bone marrow transplant was performed at the University of Minnesota in 1968 and breakthroughs have continued at a rapid pace. This procedure was the genesis for world-wide research on the use of stem cell transplants to cure patients with cancer and other diseases like ALD. Bone marrow transplants can provide long-term benefit to boys who have early evidence of ALD, but the procedure does carry risk. Dylan’s family was willing to take the risk to give him the chance at a future full of health and happiness.
After months of enduring a pain-staking preparative regimen consisting of chemotherapy and resulting side effects like fever, nausea, rashes, and labored breathing, the day of transplant had finally arrived. Before the transplant, a minister came in with a prayer and blessing for Dylan. After the blessing Dylan’s mom was praying out loud, as she peered out the window towards the heavens she noticed a beautiful white bird sitting on the edge of the building. The first thing she thought was that God had sent a sign of "peace and purity."
Unlike the chemotherapy, the transplant procedure was amazingly simple. Dylan’s transplant consisted of umbilical cord blood collected after the birth of a baby. The amount of cord blood was similar to ½ a can of coke. The birth date on the bag of cells showed June 2005. The donor was now two-years-old and had given the greatest gift possible at such a young age – new life to Dylan. The bag of cells started coursing into Dylan’s veins around 1:20 in the afternoon, 15 minutes later it was finished. The weeks of virtual isolation after the transplant were difficult. Dylan needed to rebuild his immune system from scratch with the new bone marrow. He fought fevers, high blood pressure, more skin rashes and infections. After nearly two months in the hospital, Dylan was discharged. The donor’s bone marrow had engrafted into Dylan at 100%.
Rebounding and Rehabilitating
His body is now rebounding with healthy cells and he is working hard at regaining his strength. His disease progression has been halted. Although close monitoring will be a constant in Dylan’s life, the family is ready to move forward. The family is grateful for each and every day.
There are many incredible medical facilities, but people from around the world continue to find the University of Minnesota when looking for cutting-edge treatments in bone marrow transplantation. The researchers at the University of Minnesota are pioneering research focused on improving the safety, the effectiveness and the breadth of this procedure. With continued research, diseases like childhood cancer and ALD will become 100% curable and children like Dylan will have the opportunity to lead healthy, happy lives.
