From Dakota Bihn’s Caring Bridge website journal entry
November 20, 2008

Two years ago - November 2006 - the Plain Dealer did the four part series on Dakota and Lexi, and an editorial on the fifth day. I wrote an editorial after the article came out - but it was too long. They eventually posted a much shorter version of what is posted below. I was reading it today and was struck by how appropriate it is even today. So I thought I'd share it with you - Ken

My daughter Dakota was the subject of a four part article entitled “At What Cost?” and a subsequent editorial in the Plain Dealer entitled “Hope and Reality”. The article chronicles the journey of our family as we learn in September of 2005 that the younger of our two daughters has Juvenile On-Set Tay Sachs Diseases; we take her to Duke Medical Center to have Dr. Joanne Kurtzberg (Dr. K) perform a cord blood transplant; and you follow our journey as inpatient, outpatient and eventually her return home to Olmsted Falls.

The story begins with a six year old girl “skipping down the halls” and moves to the diagnosis where Dr. Marvin Natowicz reveals that Tay Sachs is hereditary and fatal. In the article Dr. Natowicz says some make it to 15 years old. The journey continues as we learn of Dr. Kurtzberg and the article recounts our meetings with her and our decision to go ahead with the transplant – against all our local doctor’s recommendations. You are told as desperate parents we skim over informed consent paperwork and after talking with Dr. K we arrive at Duke “comfortable and confident”. One hundred and twenty one days after the transplant the reader is told Dakota is “spiraling downhill”. The ethicist and other doctors recommend desperate parents should not be permitted to try these risky and experimental treatments on their children. The editorial refers to it as a “shot in the dark”. The story ends with overwhelmed parents being surprised how difficult the process is. There are multiple images of Dakota’s awaiting fate. The MRI is “as if she were laying in a coffin” and I (her father) wish her hair would grow back “so she would look better in her coffin”. The stressed parents fight and struggle with the burden of a terminally ill child – even “envying” parents that have lost their child. Their expectation of an appearance on Oprah to discuss their daughters cure is replaced with the marking of days till Dakota’s inevitable death. A riveting and emotional story – but not our story. Our lives are not a tragic tale. I wish I could trade places with each of you just for one day so you can feel the love and support my family gets. So you can watch Dakota smile and laugh her way through situations that might break an adult. I would like to give you a glimpse of how we see our journey.

Dakota had been spiraling downhill since mid 2004. Her condition was worsening quickly and when she was diagnosed with Tay Sachs disease the doctors had no idea how long she had left. We cried, we hid, we sought help and we fought for our daughter. We investigated an experimental drug that reduced the waste produced in a brain cell – but it was not showing promising results. We talked with Dr. K to get ALL of the facts. We read about models where transplanted mice were able to get needed enzymes into their brain cells – but Dakota is not a mouse. We were told of the experimental nature of the cord blood transplant for Tay Sachs – and understood the risks. We read all the informed consent forms and we considered the theory behind the transplant – and the risks – and reluctantly moved ahead. No comfort, little confidence – but with HOPE. We are caring, loving parents faced with a horrible decision that we made rationally and intelligently – despite was an ethicist might say.

Some might say a little HOPE is not worth the risk – we would disagree. There is a zero percent chance Dakota can survive Tay Sachs untreated. If we take her home and let her die – the world and medicine learn nothing. If the odds changed to one in a million with the transplant – that is huge. If you loved M&M’s and I gave you a bowl of one million – you would dig right in. If I told you just one of the million M&M’s was fatally poisonous – would you eat any? That is how huge one in a million is!

Every day we were in the hospital Dakota laughed and smiled – as did her parents. Not a weak or vacant smile – but the smile of a child capable of great things. Dakota is not a burden and we are not counting down her final days. We live every day as if it is a gift and we fill her life with love and laughter – and she repays us one hundred fold. She is strong and we are strong.

I am a lucky man surrounded by a loving, compassionate, intelligent wife. My older daughter Bailey is everything a parent would wish their child to be – even in a less then perfect situation. And our family, friends, and community are second to none in love and unending support. We have seen the best of the human spirit – both inside and outside our family. We have been blessed to meet some of the strongest kids this planet has to offer – and we have been changed by their smiles. We are honored to have Dr. K fight so tirelessly to cure the diseases that is killing our children.
I wish you could be me for just a day.

The tragedy in this story is that you never got to hear the real story. There was not enough room for the hope and laughter – just the despair and controversy. We don’t have that problem in our life.