Max & Myles

In his family, six-year old Max Dannen is a super hero. He was diagnosed with Morquio syndrome (MPS IVA) in April 2015. MPS IVA is a rare genetic condition caused by a lack of enzymes. This progressive disorder results in buildup in the bones and organs and affects a child’s appearance, organ function, skeletal structure and physical abilities. 

This news was initially devastating to the entire family, but Max's positive outlook reassured everyone that life would go on. 

“Max’s diagnosis was very scary for our family due to the unknown road ahead, but Max’s courage and charisma have given us the strength we need to support him on this journey as well as serve as a constant reminder of what is really important,” said his mother Brooke Dannen.

Max’s little brother Myles Dannen, who is only a year old, also has MPS IVA. 

“The boys’ diagnosis has definitely been trying for our family but also a beautiful time for us,” Brooke said. “Max’s diagnosis came when we were expecting Myles and once Myles joined us we learned of his diagnosis.”

Each week both boys receive a four-hour infusion to replace missing enzymes. Max is able to receive the infusion at home and Myles receives his weekly infusion at the Blank Children’s Hospital Infusion Center. Their pediatrician Dr. Lisa Menzies has taken on the role of managing these infusions. 

“Our family now truly understands the meaning of ‘taking things a day at a time,’” Brooke said. “Learning to appreciate the small things has actually been an easy task for our family. We spend a lot of time in the infusion center and at doctor’s appointments and we make the best of it!”

Both brothers follow-up with nine specialists, most require traveling out of the state due to the rareness of their condition.  The boys have frequent doctors appointments to closely monitor their medical condition and are anticipating multiple surgeries in their future. Max recently had a cervical fusion and decompression in Wilmington, Delaware, and is recovering wonderfully. 

“The boys’ diagnoses have shed a lot of light on their future,” Brooke said. “The future we once saw for our children has changed dramatically, but we know there is a reason. We know our boys are going to impact this world in an amazing way! They are strong, resilient, and smart boys.”