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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: BeAHeroBecomeADonor.org 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

Six years without our boy....

November 2, 2013. Hard to believe it has been six “long and fast” years since we lost our perfect boy. 

I wrote this early this morning, but just coming back now to post.  I had to share my day….woke early to write, thinking about Evan.  Spoke to both Mary and Derek.  Mary at work and D at college.  Off to mass at 8am with Mark and Alaina.  Headed to another neighboring Catholic church for a memorial mass with a group of my grieving momma friends.   Home to get ready for Alaina’s big bday bash tonight and I get another call from Derek asking me what I was doing. Then I hear the doorbell and who do you think is there, my son.  He came home to surprise Alaina for her bday. What a great brother!!  Lots of messages via FB, text and calls sharing Evan thoughts. Super important to this momma.  Now taking breather, one hour before the festivities begin.  Lots and lots of tears today….

The memories of the last six months with Evan will be etched in every fiber of my being forever.  When I allow myself to go back, I can literally “feel” each and every moment of each and every day that began on April 30, 2007 when Evan had that seizure on the pool deck at swim practice that started us on this journey.

Today is All Soul’s Day. Could not have been a more perfect day for my perfect, vibrant boy to enter the pearly gates of Heaven.  Add to that that tomorrow is he and his twin sister Alaina’s 16th birthday, I for one am glad all this bittersweet emotion is shoved into one two day experience so that like the half marathons I have taken to running this past year, I can just “get it over with”. 

This year has been momentous on many levels.  I know many of you look forward to my yearly updates so that you can share our lives still, like you did for so long, starting with the six month fight for Evan and then the early years of the grieving process.  Six years later nothing has changed with the process.  We can still can feel the agony of missing Evan on a daily basis, but the difference is that we have all learned to “tolerate” missing him, something we as human beings must be able to accomplish, otherwise our psyche could not survive.

After touching base last year, I started to think about turning “50” and how I would mark this momentous occasion. Since I could get no takers on climbing Mt. Whitney with me, I knew something else pretty big was in my future, and when exercise friends mentioned they were training for a half marathon, I decided that since I “hated” running so much, this would be the challenge to take on.  Training with my new friend Liz was great, if you could actually call running in any capacity great, but she has always kept me entertained, an important aspect in a running partner.  As we were about two weeks from the race date, we learned our race had gone bankrupt, so we quickly scrambled to find a replacement, which was known as the “beach series”, three races throughout the year, this first one being on Super Bowl Sunday.  Always up for a challenge, I embraced the race and came out 2 hours and 16 minutes later no worse for wear, and feeling very accomplished, knowing that at almost “50”, I was in the best shape of my life.

 Three days later, I was diagnosed with bladder cancer.  I will tell you that every single person I knew would say the same words, “Gina is the LAST person we would expect to get cancer”and I have to admit I agreed.  I should go back to last December, and tell you after a long training run that I saw some pink after going to the bathroom. Never one to ignore a symptom, Mary quickly googled “blood in urine”, even though at that point I wasn’t sure where it was coming from, and along with cancer being mentioned, “strenuous activity” was stated.  FYI, I had just returned from my longest training run ever.  Lucky for me being so diligent, I kept an eye on the pink and knew when my urologist friend returned from his winter vacation, I would mention it to him.  Needless to say, he was all over me to get some testing done and three days after my latest, biggest accomplishment, that half marathon, we looked at the tumor that grew inside of me.

As Mary and I sat in that conference room, listening to my future spelled out, we were both numb.  I had NO risk factors, as a matter of fact, I could not have been in better health.  But, lurking in the back of my mind was what had the environmental impact of living by the Los Angeles airport had on me. Or perhaps it was all the fertility drugs I took to build my family.  Then of course, we do know that stress plays a huge role in our health, perhaps, like 4 other parents who are in the fight or who lost the fight with their children, we are victims to the cancer that took advantage of us in our weak states?!

Regardless, the fight for myself had to begin.  One week later I had surgery to remove this foreign body from my body. I could not wait to remove this cancerous growth from me, and to celebrate, I made my running partner go on a 10 mile run two days before surgery to just prove to myself I was going to win.  Literally three blocks from the finish, I caught a curb and went face first to the cement, just adding to the misery I was already experiencing.  Awesome to say the least!!  At least I now looked like the prize fighter I was gearing up to be.

Three days after surgery my friend, lifesaver and urologist walked up my stairs to where I was recouping and told me of my prognosis.  Low stage, which we know is critical. Thanks to Jim’s insistence on testing right away, the cancer was superficial and had not invaded the muscle wall.  A huge sigh of relief on that one.  Didn’t know though that cancers were graded, and now I was told mine was high grade, which meant that it wanted to beat me and that for the rest of my life, we would chase this thing.  Hmmm, was I really up to another life long challenge?  And now the treatment….thank God no chemo or radiation. In the bladder cancer world, they are able to use “tuberculosis” instilled into the bladder to kill cancer cells, and hence the two year treatment plan began.  I have tolerated treatments better than my doc and the web has expected.  In June I went to the top urologist/oncologist at Stanford University and she went into the OR to take a peak and biopsy my bladder, all good! And just a few weeks ago my doc gave me my latest “all good” for the moment.  Big sign of relief.  But as all cancer patients know, you are only good until your next symptom or next scan, and you lie in wait for your sentence to be handed to you. Sucks!  But here is the bottom line, at least it was me, and not my kids or my husband, for that I was grateful indeed.  By the way, I went on to train for my 2nd and 3rd half marathons ,this time Mary joining us, and have recorded my personal bests each time.  My physical therapist has made me promise no more races for one year, and even though I told Mary on mile 11 of our last race, “remind me of how horrific this feeling is”, I am bound and determined to break 2 hours, only 3 minutes away, next October!!  Man, wish I didn’t have that “competition” gene!!

Mary, now 26, almost two years into her nursing career, has excelled as we all knew she would.  She has her dream job as a critical care nurse at a major hospital just 20 minutes from home, has never worked a night shift, and is looking toward her future.   Mary is now home, packing away the money for her future home, and we are enjoying having her with us.  I am forever grateful to have her with me with my medical issues for sure.  FYI,searching for single, self-motivated 26-32 year old male, who lives local and is a practicing Catholic….

My man child Derek turned 18 in December, swabbed his cheek,and in June, graduated number two in his class of 800, with numerous accolades, with his international baccalaureate diploma. He is off to UC Berkeley, the number one public school in the world, and LOVES college life.  At this point he is a declared double major, “environmental cellular biology” and “molecular cellular biology” and while he has no interest in med school, a Ph.D. is his desire, leading him to a career as a researcher and college professor.  Let’s see where the future leads him.  Incredibly proud of my son.

Alaina Marie turns 16 tomorrow. Tonight we host her “sweet 16” party with no less than 100 kids expected. Wish us luck!!  She has recovered beautifully from her dual shoulder surgeries and along with winning the national championship in water polo this summer, she was chosen as an All-American.  She finished her freshman year with straight A’s, is sowing her oats to be sure, and working hard in school and polo as she looks to a great university to study and compete at.  Monday we go to the DMV for her behind the wheel, and she is hopeful to be driving off in the sunset without us!!

Mark is well.  He and Alaina had the privilege to travel to Italy this summer for a water polo training trip.  He continues to volunteer for USA Water Polo and is definitely “farmer Mark” now, spending lots of his little spare time in his garden.

I am proud to say Evan continues to leave quite a legacy.  This year we hit over 20,000 donors recruited to the national registry, every one because of Evan and his foundation’s work. Every one on there because of the volunteers around the nation who made the decision to help honor my vibrant boy and participate in some capacity to share his journey. 

I would ask you all to read the following letter I wrote to commemorate Evan’s 6th Annual Water Polo tournament last month.  I want to share all the good that has come out of our water polo community, great video on our latest donor match, and ask that you please consider helping us celebrate Evan’s 6th Heavenly Birthday and to make a donation to help us keep Evan’s legacy alive


If you don’t care to read the letter but would like to make a donation, the link to the site is http://www.firstgiving.com/fundraiser/BAHBAD/beaherobecomeadonorfoundation

Thank you for continuing to be part of our journey, without all of you, I am not sure I could have survived.

Forever Grateful, Evan’s Mom

 And please consider staying in touch with the work of Evan’s foundation and “LIKE” us on Facebook:     BAHBAD Foundation page   /  BAHBAD College page