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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

Latest Journal Update

Help us celebrate Evan Cousineau and his Lifesaving Legacy

Eight long years, and I am still alive and kicking.  Thankfully for all of us grieving parents, while our loss is great, we do learn in time to tolerate our pain and find joy again in our earthly lives. 

When those words were told to us that our son Evan had a terminal diagnosis, time froze. All I could think about was playing with Evan until he couldn’t play any more. Who would have dreamed exactly six months to the day of his diagnosis our son would die in our arms, the night before he and his twin sister's 10th birthday.  In the blink of an eye he was gone and our lives where turned upside down.

Eight years later much as been accomplished because of our tragedy and each of us is forever changed.  

For those of you that are reading this today, you are our loyal companions, who lifted us up on our worst days, cried tears with us, smiled and laughed with us on our good days, and watched us rebuild our lives in the midst of our tragedy. Thank you.

Today, 8 years after the loss of our almost 10 year old vibrant boy, because of Evan’s journey, countless lives have been impacted and potentially saved.  This gives me great solace. While I would take Evan back in the blink of an eye, I can only hope that we still would have made a great impact in this world with a healthy boy who survived his terminal diagnosis, all because of two sets of parents who said yes to donating their baby’s cord blood to save my baby.

Today, we are just shy of adding 25,000 donors to the National Bone Marrow registry since Evan’s own donor event in May of 2007.  With the help of volunteers across the country,  hundreds of drives later and dozens of donor matches to date, we could not be more thrilled with the impact Evan’s legacy has made worldwide...and we are far from through.

Today, you can choose to be part of celebrating what should have been Evan’s 18th birthday and senior year in high school, next to his womb mate Alaina.  We can’t do this alone.

Along with the almost 25,000 donors added to the registry, we have been one of three foundations here in California that drove legislation for newborn screening for ALD.  The governor signed our bill last Fall, and we hope to begin testing babies in our state next year. We were also part of a huge effort with other ALD foundations to get newborn screening approved at the national level, which was passed this past August.  Just waiting for a signature and then several more states will be testing as well. We hope that within the next few years every state will be testing for ALD, which will change the course of life for families like ours.   Had NBS existed when Evan was born, we would have followed him with a neurologist and endocrinologist, and as soon as progression began, he would have gone to transplant then...and today he would be a vibrant 18 year old getting ready for college with his twin.  

Here are some suggestions for how you can get involved:

Please visit our new website just debuted on Evan’s Heaven day November 2 at

Consider making your annual donation to Evan’s foundation online at or by check, made payable to “BAHBAD” to 211 W. Avenida Cordoba San Clemente CA 92672.  

Every dollar counts on our quest to put donors on the national registry, to help fund ALD research, as well as to help families in need of financial assistance.  

While the Annual Evan Cousineau Cup is our primary fundraiser for the foundation, we have designated half of our profits from this year’s event to one of our water polo coaches, whose young wife is battling stage four breast cancer, so this year we could really use the extra boost of our social media campaign.

Consider being part of our Be A Hero Become A Donor Family!  If you have been touched by donation of bone marrow, blood, cord blood, or organ/tissue, we want you to be part of our foundation’s work and story.  Please go to for more information.   Whether you simply share your journey, choose to host an annual event to honor your loved one’s victory or memory, or want to join our efforts to save lives as a lead volunteer in your community, we need your help in our lifesaving efforts.

If you would like to stay in touch with our family’s antics, follow me on Facebook at

If you would like follow the foundation on Facebook, please “LIKE” one or both of our pages at  or

We are also on Instagram at and Twitter at

"Infuse your life with action. Don't wait for it to happen. Make it happen. Make your own future. Make your own hope. Make your own love. And whatever your beliefs, honor your creator, not by passively waiting for grace to come down from upon high, but by doing what you can to make grace happen... yourself, right now, right down here on Earth."

-Bradley Whitford

God is my creator and my hope is in Salvation. And I refuse to live my life on this earth without fiercely loving those who need and want it from me! 

Evan’s Mom Gina