Mon, May 20, 2013

Autistic siblings make impact

TURNER/AUBURN- Six-year-old Tucker Sastamoine, formerly of Dixfield was drafted by the Central Maine Community College mens' basketball team on February 7 as an honorary Mustang and introduced as their sixth starter before their game against Southern Maine Community College. His five-year-old sister, Ava, was also adopted as a member of the cheer leading squad by leader Melissa Lyons.

Tucker and Ava are the children of Keith and Kelly Sastamoine, formerly of Dixfield. Tucker was connected to the Mustangs coach and CMCC athletic director, Dave Gonyea, through Team IMPACT (inspire, motivate, play against challenges together) of Quincy, MA.

Tucker suffers from mitochondrial disease, a chronic, genetic disorder that occurs when the mitochondria of the cell fails to produce enough energy for cell or organ function; some of his symptoms include severe gastrointestinal diseases requiring a feeding tube, heart disease, autism and several others, all effects of an 'energy failure'.

Ava has also been diagnosed with autism and suffers from gastrointestinal diseases, including Celiac disease. She remains on the watch list for mitochondrial disease.

Tucker makes frequent trips to Boston, to see a multitude of specialists and check in with the providers at the coordinated care and palliative care unit. Shellie Legere, a Rumford native, is now employed at Mass General Hospital for Children and works extensively with the families of these children. She suggested the Sastamoine family consider hearing the offer from Team Impact.
“Until now, Tucker's teachers, therapists, and specialists have made up our team,” noted mom, Kelly. “And it is so refreshing to have these men on our team now. We are so blessed. I am very excited for Tucker and our family, especially his sister.”

Kelly went on to state, “Coach Gonyea and the men on this team have not only made a huge commitment when they signed their contract to help, support and keep in contact with Tucker, as he faces the challenges ahead, they have opened their hearts. It has been amazing to watch them all. It speaks in volumes as to the kind of men they are.”

“The relationship with Tucker has just begun,” noted coach Gonyea. “But, over time I know a strong one will develop. Our players enjoy his company and having him around. Our players are great with kids and have been humbled by Tucker's presence and his condition. Although they (the players) don't fully understand Tucker's condition, we hope to have his mom in soon to explain and help our players understand his situation better.”

Kelly remembered a special moment for her during Tucker's first game, “I had to carry Tucker through the gauntlet of starters, and when I looked up it was as if we were under a canopy of arms, raised above us, they were cheering loud and then it happened. Tucker lifted his arm right into the middle of theirs, it is an image that I hope has been burned into my brain. It was as if it was a God picture. I'm not sure it was anything a camera could have captured, the feeling was too intense.”

Ava, too, has had her share of first experiences. Cheer squad coach, Melissa Lyons, noted, "Spending time with Miss Ava Sastamoine has truly been an amazing experience. At the first meeting, Miss Ava's smile showed what a truly awesome cheerleader she would be. Now, she bravely helps start cheers, learns crowd chants, and even acts as a flyer on top of stunts. We have fallen in love with the beautiful Sastamoine family and will include them in our future activities. As a coach, it is special to see how the members of the squad have been inspired to give back as often as possible. We are truly thankful for this wonderful opportunity, the CMCC cheerleaders are absolutely pleased to have Ava a part of our team." 

The Sastamoine family is in this life for the long haul, as there is no known cure for mitochondrial disease. It is their hope that families living with life-long illnesses learn more about Team Impact.
“This is a gift that needs to be shared,” stated Kelly.

To learn more about Team Impact, visit www.goteamimpact.org or contact Maura Mahoney at 857-939-0689.

To learn more about Mitochondrial disease, visit www.mitoaction.org.

If you would like to learn more about Central Maine Community College athletics or to watch the feed of the game, visit www.cmcc.edu/athletics/ or www.mbrtv.org.

Copyright 2013 Sun Media Group