The Bosch Family

Patient: Daniel
Age: 3 months
Diagnosis: Hurlers Syndrome
Length of Stay: 4 months

Our little precious son Daniel was born on October 17, 2004. Like any parents, we were so excited to bring Daniel home. We had no idea that the road ahead of us was about to take a drastic turn. Two weeks after being discharged from the hospital, we received a call from our doctor informing us that Daniel had failed his newborn hearing screening at the hospital. We were asked to bring Daniel in for another exam, and were assured that there have been many cases where newborns fail their first test and when reevaluated, pass the follow-up testing. We had Daniel retested and once again he did not pass. This was the start of multiple health concerns that our pediatrician began to discover. More intense tests, blood work and an MRI confirmed that our son had Hurlers Syndrome. Our lives were immediately turned upside down.

Hurlers Syndrome is an inherited, progressive and often fatal storage disease which affects numerous organs of the body. The disease is caused by a deficiency of an enzyme that we all need to break down complex sugars. Without this enzyme these sugars accumulate in virtually all the tissues of the body. The result is bone deformities and possible loss of hearing and eyesight. We were told that there is no cure for Hurlers and that the normal life expectancy of children diagnosed is 5 years. We refused to give up on Daniel... we searched high and low for help and discovered that the University of Minnesota Children’s Hospital was conducting new treatments for Hurlers that could possibly slow the disease and reverse much of the damage. Within two weeks we left our home in Michigan and were in Minneapolis consulting with doctors who confirmed that Daniel would benefit from these new treatments which would include a bone marrow transplant.

On June 10th Daniel’s bone marrow transplant took place, with his older sister Rachel as his donor. Daniel is doing so well... he has a smile that lights up a room. He continues to learn and grow as any child would. When we realized that we would be away from our home in Michigan so long for Daniel’s treatment, we had no idea how or where we would live. Our family couldn’t imagine being separated during this overwhelming time in our lives. That worry was quickly diminished when we walked into the Ronald McDonald House. We have never been so humbled and overwhelmed. The staff at the House welcomed us and took care of our every need... so much so that we soon realized that we would indeed be able to move forward as best we could as a complete family... all together. My first instinct upon entering the House was to sit and cry when I saw so many families experiencing the same thing, but instead I learned that the Ronald McDonald House was here to enable us to continue to live our lives... continue to smile... and continue to look to the future. We are not alone at the Ronald McDonald House. The relationships we have with other families and the staff, and the support we have received has enabled us to remain strong for Daniel... and for each other.

Daniel and his family were able to return to their home in Michigan on September 17, 2005. You can continue to follow Daniel’s journey by visiting his website at www.caringbridge.org/mi/danielbosch

I had always heard wonderful things about the Ronald McDonald House, but never in a million years did I think it would touch my family, and to the extent that it has.
--Daniel’s Mom

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