Finn likes to throw things

Golf balls, tv remotes, food--you name it, and Finn has probably thrown it. It doesn't matter to him where it goes. It matters that its gone.



He isn't walking yet, but we're close.



Developmentally, he seems to be doing well.

Camp Sunshine

Soon after the benefit, Bridget, Finn, and I traveled to a place called Camp Sunshine in Maine. It was an invaluable experience--hard to put the right words on it.

Every other year, families contending with DBA meet at Camp Sunshine to share their experiences, questions, frustrations, and hopes. For the children, it truly is like summer camp. Volunteers come from all over the U.S.A. to give of their time, acting as camp counselors for the children, watching over them and leading them in exciting activities so that the childrens' parents can attend numerous workshops and seminars conducted by leading DBA researchers and doctors.

Being a baby, Finn wasn't ready for archery or kayaking, so a kind woman who traveled from New York to volunteer cared for Finn each day from morning until late afternoon. The instant we met her, we knew Finn was in GOOD hands. It was the first time we'd ever left him with anyone other than family. Thanks to her, we were able to concentrate on the seminars, which covered everything from ongoing research into curing DBA, improved treatment methods, and comparative analysis of DBA patients and otherwise healthy humans with regard to life expectancy, growth and development, and susceptibility to diseases like cancer. It was a whole lot of dense, complicated, and frightening information to synthesize and absorb.

In addition to the seminars, there were a few facilitated discussions that allowed parents of children with DBA to meet and share their experiences, fears, frustrations, and hopes with other people who actually knew exactly what the other parents were going through. During the first workshop, we were to introduce ourselves, describe how we learned our child has DBA, and share how we've been treating it. There were a number of stories that sounded almost identical to our own. It was difficult to keep from getting all choked up hearing story after story so similar to Finn's. Because DBA is so rare, it was the first time Bridget or I actually met another person besides our doctor in St. Petersburg who knew someone with DBA. We keep in touch with several families from Camp Sunshine and rely on them frequently for advice and support.

Transfusions Are One of Just Three Ways to Treat DBA

This photo was taken last Christmas. A few weeks later, he received a transfusion of red blood cells. Finn's veins were almost to the point of collapsing--the nurse attempted to insert the IV needle three times before getting a good connection on the fourth try. The inserts an even smaller made out of something that looks like thread. It leads out of the arm and connects to a gasket that screws onto another gasket which leads to to a tube going up to a bag of somebody's donated blood that is checked and double-checked to ensure that he can safely receive it.

The photo above is haunting. It is so easy to see all the warning signs, now. He is pale--almost flourescent--listless. That Christmas everybody observed how calm he was, how fair-skinned. We called him Buddha-Baby. He was happy, just very mellow. He wasn't eating well. The pediatrician observed it was most likely a bad case of acid reflux. We switched formulas. We tried everything. Then he began sleeping poorly. And, for the first time ever, Finn became really cranky. Bridget called the Doctor again--this didn't seem like just acid reflux. The receptionist squeezed Finn into the schedule. Minutes after the appointment began, the doctor ordered Bridget to take Finn to the emergency room at All Children's Hospital.

During the transfusion, Finn's lips grew red. The blue veins in his arms faded away as his skin became pink.

But, we did not know, then.

It takes about 10-15 minutes to get the IV all set up.

Four Months Since the Benefit . . .

This photo was taken about a month after the benefit. Finn received steroid therapy during this time.

It's been over four months since the Finn Gunderson DBA benefit--a truly remarkable night that ranks among the best nights of our lives. The response was overwhelming and Bridget and I knew then--without the slightest doubt--that we were not alone in helping Finn to live with and hopefully overcome Diamond-Blackfan Anemia.





An entire community of friends and family joined together in downtown Orlando (and those who were unable to attend were there in spirit), to support us in supporting our son. It is hard to put into words how encouraging that evening was. Whenever memories of the evening pop up--a smile, a conversation, a song--it lifts us up and gives us hope. The last four months have been challenging, to say the least, on many different fronts. Life, as you all well know, continues happening--loved ones pass away, close friends become ill, and relationships evolve. At times it has been overwhelmingly stressful and it is during times like those that we simply take it one day at a time and strive to be positive and grateful.





Finn, of course, is our main concern. In the next post, I'll explain what we've done, what we are doing, and what we will be doing to help him live with--and hopefully overcome--DBA.