The most authentic thing about us is our capacity to Create, to Overcome, to Endure, to Transform, to Love, and to be Greater than our own Suffering!!
Watch our family's journey called A Mother's Quest
Our Evan was a very active nine-year old boy. He loved school, but preferred to be outside playing with friends, competing with his ice hockey, water polo and swim teams, and hanging down at T-Street beach here in San Clemente, California, his home. His sweet, bubbly and loving personality was and still is appreciated by all who met and continue to meet him through this website. On April 30, 2007, after swim practice, he had a seizure. This lead to his diagnosis, the following day, with ALD, adrenoleukodystrophy, a horrific genetic metabolic disease. We immediately were told this disease would take his life within the next 6-12 months, and it would be a horrendous end of life to boot!! We were led to the University of Minnesota where Evan was the first ALD boy to use a “new drug protocol” prior to his Bone Marrow Transplant, which could not only save his life but change the course of treatment for future boys diagnosed with ALD.
Evan, his 20 year old sister, Mary, and his Mom, Gina, headed to Minneapolis where they planned to say for the next 100 plus days as Evan went through treatment and recovery. While he ended up being hospitalized for 138 days of the 145 days he was in Minnesota, we had a room at the Ronald McDonald House down the street, which Mary, and visiting family and friends, could call home. Evan only spent 5 days at the Ronald, but it made a lasting impression on our son. Mark stayed back in San Clemente, running his business, and caring for Derek (12) and Alaina, Evan’s twin (9). They visited often in between school and their sporting activities, and even in the midst of this tragedy, the kids thrived. Derek swam the Alcatraz Ocean Swim in June, and competed in the National Junior Olympics for swimming and water polo, where his polo team won the National Championship in August. Alaina competed in swimming and water polo events too, a runner at heart, qualified for sectional Track JOs in July and the National Cross Country JOs this past December. The family spent many hours traveling back and forth from the Midwest to the West Coast, loving every moment they could spend together as a family.
Evan’s transplant was considered a miracle, as not only did he have 100% from his two cord blood donors, but the new protocol allowed for him to have less brain trauma and hence, better quality of life after transplant. He battled unknown fevers and moderate to severe graft verses host disease (GVHD), but he rallied. When we left the hospital on day +43, August 8, Evan could walk and talk and was completely cognative, something they had not seen in past ALD boys post transplant. Although he had lost his ability to process sound and a large portion of his sight, he was still a happy, vibrant boy who seemed to have a chance of a full life ahead of him. Two days later he was back in the hospital with a fever, which we eventually found out was caused by the “adenovirus”. This virus, in combination with his severely compromised immune system because of the BMT treatment, eventually caused his demise on November 2, the day before his and his twin sister Alaina’s 10th birthday.Please watch and shareBe A Hero, Become A DonorFollow Evan's JourneyVisit our Caring Bridge siteSee who's making a difference in honor of EvanVisit Evan's Entourage