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Boy with a terminal disease reaches for his dream to be a Maine Game Warden

Connor Haskins has a rare genetic disorder that impacts his muscles and organ development

LUBEC, Maine — In September, we told you about a seventh-grader from Lubec who was sworn in as a junior game warden by the Maine Warden Service. 

Connor Haskins has aspired to patrol the outdoors since childhood, a dream nearly derailed by a rare disease. 

Earlier this year, the 12-year-old started traveling to Boston every two weeks for treatment that could prolong his life, inspiring many along the way.

Connor loves spending time with his best friend, Brady Huntley, and playing sports, especially basketball. But a year ago, his world turned upside down after he felt faint and had trouble breathing while playing in a basketball game.

"I blacked out and woke up in the hospital," Connor said.

Connor was eventually diagnosed with late-onset Pompe Disease, a genetic condition in about one in 40,000 people. It is caused by a deficiency in an enzyme that breaks down a complex sugar called glycogen into glucose, which the body uses for energy. As glycogen builds up, it causes muscle weakness and pain and can impact organ and tissue development. 

"It eats my muscles. Usually, my muscles are tired and hurting, and some mornings I can't walk," Connor explained.   

"It will also get to his kidneys, heart, and lungs," Connor's mom, Ashley Handzlik, said.

Pompe disease has no cure and is a terminal illness. However, there is a treatment that has been shown to extend the life expectancy of patients. 

Connor, who has two younger sisters, has made the more than six-hour journey every two weeks since January to Boston's Children's Hospital. There, he receives Enzyme Replacement Therapy or ERT. 

His mom says he was the hospital's first pediatric patient to receive a new medication called Nexviazyme, but each session is a grueling 13 hours. The treatment has also renewed his hope of becoming a Maine Game Warden after being rescued after getting lost in the woods as a child, plus his love for the outdoors.  

"Regardless of him being sick, I think it's important for him to live out his dreams," Ashley said.

Ashley contacted Game Wardens, asking if they would meet with Connor and explain what the Maine Warden Service does.  

Warden Matt Tenan met Connor, learned about his battle with Pompe disease, and planned to give the youngster a full day as a junior game warden.  

After being sworn as a junior game warden at Lubec Consolidated school assembly, Connor rode with Warden Tenan on a staged call concerning a poached deer discovered at a nearby wildlife management area.  

"It excited Connor and gave him a taste of it and something to work towards and keep getting his treatments and staying as healthy as he can," Tenan enthused.

Connor is inspiring his classmates and community, especially his best friend. 

"What he is going through, how good of a friend he is," Brady added.

Connor said that being mentored by the Game Wardens motivates him never to give up.

"My motto is don't let anything affect you from what you want to do," Connor exclaimed. 

A GoFundMe account has been set up to help Connor with transportation and medical expenses as he travels back and forth for treatment at Boston Children's Hospital. 

 

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