Derek’s Story: Surviving Hurler Syndrome

Jono Stories

When Derek Hanewacker of Flint, Mich., was only 10 months old he was diagnosed with Hurler Syndrome, a rare genetic disorder that causes progressive physical and mental deterioration. If left untreated, patients with Hurler syndrome typically don’t live past the age of 10. Derek’s parents Holly and Scott soon learned that the best place to treat Derek’s disease was University of Minnesota Children’s Hospital, using stem cell therapy treatments funded in part by grants from Children’s Cancer Research Fund.

The Hanewacker family arrived in Minnesota in January to begin Derek’s workup for his umbilical cord blood transplant. While Holly was able to stay in Minnesota with Derek as he prepared for transplant, Scott had to return home to continue working, as he became his family’s sole financial provider. The family soon realized that visits from Scott would be rare, because of high airfare costs and poor winter driving conditions.

For families, stem cell transplant day is one filled with celebration and hope – hope of a new beginning and chance at life without the devastating effects of cancer or rare illness. Sadly, Scott was going to miss this important milestone, making the choice to put money toward medical bills, instead of a costly flight to Minnesota. That was until a Child Family Life specialist at the hospital surprised Hanewackers with a Care Flight.

Scott flew in on transplant day, arriving early in the morning before Derek was awake. When he woke up and saw his dad – he clapped his hands and smiled. Thanks to the generosity of SkyMiles donors, Scott was there for Derek’s big day, standing by his wife Holly’s side, thankful to be together for this important milestone.

The Care Flight program, supported by Children’s Cancer Research Fund, helps connect families during a child’s cancer journey. As a Delta Air Lines SkyWish Charity partner, Children’s Cancer Research Fund relies on individuals, like you, to donate your extra miles in support of families like the Hanewackers.

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