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Evan’s Story

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!! Please visit our foundation's website and help us "give HOPE to patients and families in need" in honor of Evan and every patient in need: 949/842-9975 ginac@bahbad.orgEvan lost his fight on Friday, November 2,2007, the day before his and his twin sister Alaina's tenth birthday. For more info on his fight and our campaign to "Save Lives in Honor of Evan", visit our
Be A Hero Become A Donor Website

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.

Through Evan’s Journey, we have decided to take Evan’s lead, and have moved our campaign from our original focus of “Fight for Evan/Stop ALD” to “Saving Lives in Honor of Evan”. To find out how you can make a difference and save lives, keep reading the daily journaling on this site and check out Evan’s Website and consider "Save Lives in Honor of Evan",
Be A Hero Become A Donor Website

World Wide Causes you can be part of by joining Evan’s Entourage:
(The only prerequisite to join is PASSION, NO money ever required)

1. Raising awareness regarding Bone Marrow, Cord Blood and Blood product donation educating communities around the nation by organizing and funding drives.
2. Educate the community on the importance of becoming part of the Organ and Tissue Registry to save lives.
3. Communicating with medical professionals regarding the value of Palliative care (not hospice care) by using Evan’s journey to help educate them and families regarding this specialty.
4. Supporting Ronald McDonald Houses across the nation by volunteering/donating, but most easily by collecting pop tabs for your local house.
5. Reaching out to communities to provide resources to help Grieving Families, especially to the children left behind after the loss of their parent or sibling.
6. Sharing our love for Caringbridge. Please tell a friend who might need a site of their own, and consider making a monetary donation in Evan's honor under "Tributes" at above.
For more ways to help:
Be A Hero Become A Donor Website