Love for Luke

Hello, we would like to introduce you to our son Luke. Luke is an energetic, happy, curious, goofy, strong, resilient and extremely loving little one year old. Like many on here Luke’s story is very unique and words can only briefly describe the fight our little man has been through. Our adventure started during Luke’s routine 4 month check up. Our pediatrician noticed something was off, Luke looked pale and she noticed a small heart murmur. After blood draw results came back Luke’s hemoglobin and neutrophil levels were extremely low, and his platelets were extremely high.  The tone of our visit quickly turned to concern and we were immediately directed to go to the hospital for further testing. Those next few days we sat through multiple meetings with doctors, nurses, specialists as they eliminated various diagnosis trying to figure out what could be causing these extreme blood counts.

We are now almost a year into this process and after numerous visits, stays, tests, biopsies, blood draws, transfusions and sleepless nights Luke’s case is still very curious.  Luke carries not one but two very rare genetic mutations (Diamond-Blackfan Anemia and Fanconi Anemia) that had doctors scratching their heads for quite a while.  However, after months of tests our wonderful team of doctors have determined that the Fanconi mutation Luke posses is a benign case and is not affecting his abnormal blood counts.  He has now been officially diagnosed with Diamond-Blackfan Anemia while also having neutropenia. Normally DBA can be treated with monthly blood transfusions or as often as ones hemoglobin would need a boost, however, Luke’s neutropenia raises concerns to fight off potential infections. We have now reached the point where options are limited and a bone marrow transplant is imminent.

While Luke undergoes the bone marrow process his mother and I will need to take a leave from work to care for him in the hospital as well as his two older siblings at home.  So here we are, humbly asking for anything to help us get through an emotional battle as parents and to give our son Luke the best care possible.  Donations are of course desired, however, words of encouragement, prayers, shared stories are also very much welcomed and needed to help our family fight with Luke.  Thank you so much for taking the time to read about our little man and we will be sure to post updates as they come!