Watertown boy gets his ultimate wish granted this week

SACKETS HARBOR — Seven-year-old Shane D. Terry’s wish came true this week.

At 7 a.m. Thursday, a limousine picked up him and his mother, Kimberly A. Hayes, from their home and took them to the airport to fly to Gonzales, Calif., where they will meet Sgt. Frederick J. Lombardi of the Gonzales Police Department. Sgt. Lombardi, as well as other Gonzales Police Department officers, and Shane have corresponded from about 3,000 miles away since 2008, after members of the police department saw an article in the Watertown Daily Times about Shane having the rare condition fibrodysplasia ossificans progressiva. The Make-a-Wsih Foundation has arranged the trip.

The condition is considered one of the most disabling genetic conditions. It causes bone to form in muscles, tendons, ligaments, joints and other connective tissue. Over time, it restricts movement and forms a second skeleton. Bodies eventually become locked up. Falls can trigger flare-ups and create what’s often mistaken for a tumor when a rock-hard lump appears near the injury. The lumps gradually fade, and tissue starts to ossify.

The average life expectancy of someone with the disease is 41 years. Most people are wheelchair-bound by their 30s.

According to the International Fibrodysplasia Ossificans Progressiva Association, there are more than 600 cases worldwide.

Diagnosed in 2008, Shane now has trauma to both shoulders, and resulting bone growth has limited the use of his arms and neck.

After reading Shane’s story, Sgt. Lombardi and his fellow officers made Shane an honorary member of the police force, and the department raised funds and awareness of the condition in Shane’s honor.

As part of his wish, Shane will also go to Disneyland,.

Mrs. Hayes and family host fundraisers each year to send funds to the International Fibrodysplasia Ossificans Progressiva Association in hopes of finding a cure for the disease.

To follow Shane’s story, visit his website at www.shaneterryfop.com