Thursday, August 31, 2006

My name is Veronica Johnson and here is my story.

I gave birth to a beautiful baby boy on June 24, 1998. The first 2 days of his life were wonderful in the hospital. It was time to take Dylan home when a doctor decided to listen to his heart one more time. That is when our lives would change forever. The doctor asked if they could run a few tests on Dylan before we took him home. Four hours later we were looking at our son Dylan in NICU hooked up to monitors knowing we would not be taking Dylan home any time soon.

Dylan Michael was born with a VSD, AC Canal, Transposition of the Great Vessels, Heterotaxia, Dextrocardia, Situs Inversus, and Asplenia. At the age of 9 days old Dylan was being transported to UCSF in San Francisco for emergency open heart surgery. Dylan stayed in the hospital for 2 weeks before we were able to take him home. Our next step was to get him bigger and stronger for the next of 3 open heart surgeries.

At the age of 4 months, Dylan had his second open heart surgery up at UCSF in San Francisco. Dylan did not respond well to this surgery and stayed in the hospital for 32 days. Once home Dylan was a happy boy. Frank and I lived everyday like it could have been his last. We spent many days at the park, Great America, and just hanging out with one another. For the first time we felt like a family. We had many doctors’ visits every week and Dylan was on 6 medications a day. We knew this was going to be Dylan's way of life.

For the next 20 months Dylan did wonderful. Other than Dylan being somewhat blue in color he did great. Dylan was still on 5 medications a day but lived a normal life. During this time I met another mother with a CHD child here in Fremont. We quickly became the best of friends and Jeremy and Dylan were like two peas in a pod.

When Dylan was 22 months old I decided to contact the Make A Wish Foundation in San Francisco. I heard of the Make A Wish Foundation and thought Dylan might be able to have a wish. I emailed them and within 4 days we had a call to our house. They sent out a volunteer to interview Dylan to see what his wish was. (Normal policy is you have to be at least 3 to have a wish but they still sent out a volunteer). They brought paper and crayons and pens for Dylan to draw what he would like for his wish. Dylan was only 22 months so he really could not draw. I asked Dylan who he would like to see, he then jumped off his chair, ran into his bedroom, grabbed his Mickey Mouse ears and ran back to the volunteer. He then handed them to the volunteer and said Mickey Mouse.

It took about 2 months for clearance from the doctors for him to fly. Frank and I received a package from the Make A Wish Foundation. Inside our package was Dylan's trip to Disneyland. We spent 5 wonderful days in Southern California. Dylan had a limo pick us up here in Fremont and one waiting for us there when we got off the airplane. We spent 3 days at Disneyland and one day at Knotts Berry Farm. On July 17, 2000 Dylan had a private meeting with all the characters. Our time spent with Mickey and Minnie was priceless. For five wonderful days we never once thought about how sick he was, he was happy, something we will treasure forever.

Dylan was scheduled for his third open heart surgery on July 26, 2000. Dylan's best friend Jeremy had his open heart surgery a week earlier and was doing well after his surgery. Christy and I were there together in the hospital, we were two heart moms there for one another. Dylan came out with flying colors. For the first time we saw our son's oxygen saturations at 100%. He even turned to me and said, "mama milk". Those were Dylan's last words to me. I had to wake up Christy at 4:00 A.M. to say goodbye to Dylan. Dylan died July 27, 2000 at Stanford Medical Center in Palo Alto. To this day Jeremy still asked about Dylan. Over 300 people turned out for Dylan's funeral.

One month after his passing I was visiting Dylan's grave site when I felt something like I have never felt before. Dylan told me to grant wishes to other children. I then went and contacted the Make A Wish Foundation and told them what I would like to do. Three months after his passing we held the 1st annual Dylan Johnson Memorial Bowl A Thon here in Fremont. We raised $4.000 for the Make A Wish Foundation that day. It was a day that our family will never forget.

It is now 2006 and we will be hosting the 7th annual Dylan Johnson Memorial Bowl A Thon this October. Since Dylan's passing we have raised $43.000 for the Make A Wish Foundation. When I first started doing this 6 years ago I told myself I would do this till I reached a goal of $50,000. This year I should reach that goal, a goal I am so proud of reaching. Dylan would be proud of mommy and daddy for all we have done.

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