Evan Connelly Family Fights Fanconi Anemia with Faith & Fundraising


Lauren Van Gheem, Staff Writer, Advanced Journalism

Junior Evan Connelly and his family learned about Fanconi Anemia (FA) at his birth.

“He spent two weeks in the hospital, surgeries were scheduled and he was immediately seen by a geneticist.  At Evan’s one-month well check, we got the results from testing that said he had Fanconi Anemia,” said Evan’s mom Kim.

According to the Fanconi Anemia Research Fund, “FA is a genetic DNA repair disorder that may lead to bone marrow failure, leukemia, and cancer.  It is caused by one of at least 22 genes. It is a complex and chronic disease that is psychologically demanding.”

In 2002 the life expectancy of someone with Fanconi Anemia was 11 years old which included many hardships along the way.  Currently, many adults are surviving and thriving with FA.

“Research and care for these little FA fighters was full of opportunity and possibilities.  I will never forget looking at John (Evan’s father) on that car ride home and saying there was so much of this disease we could not control, but fundraising for research was something we could control,” she said.

Since 2003 the Connelly family has hosted several fundraisers for Fanconi Anemia and cancer research. They have raised $750,000 to date.

“With our seventh event, we had to change the name of the event to Evan’s Enchanted Evening (and Becca too!) because our littlest caboose Becca was discovered to have Fanconi Anemia as well,” said Mrs. Connelly.

All the money they raise from friends and family who attend the event goes to the nonprofit Fanconi Anemia Research Fund.

“Evan and Becca stoically handle the demands of this disease on their bodies and lives.  They both had numerous surgeries for birth defects, treatments for medical issues, yearly bone marrow biopsies and cancer screenings, monthly lab draws and appointments with every specialist one can think of,” Kim said.

All the members of the Connelly family have grown up dealing with the consequences of FA including their other kids Claire, Rae, Leah and Sarah.

Kim said, “They have grown up knowing there are times when FA takes front seat to their playdates, recitals or being tucked into bed by mom and dad.  Still, throughout it all, our family has remained the backbone for dealing with this disease.”

She said, “For John and I, we have learned to take each day as it comes and not to worry about what might be around the corner until it is staring us in the face.”

March 2 the Connelly family hosted the eleventh event for FA and cancer research.

“The night consisted of dinner, speakers, live and silent auctions and entertainment.  We were blessed to have volunteers from NDA help and NDA families attend,” said Kim.

Faith guides the Connelly family on much of their journey through the highs and lows of Fanconi Anemia.

“Our family has gone through some tough times, like so many of you and your families.  Still, we choose to believe that God walks beside us on this journey,” she said.

Faith plays a crucial role in strengthening the Connelly family.

Kim said, “God does not hand us what we need, but gives us the intelligence and spirit to create what we want.  We have the capacity to laugh when we are sad and to fight when we feel like giving up. How we handle the tough times in our lives is the true testament of His power within us.”