Bri: 30 Years in the Making from Jeff Reilly, Face First Films, and Sam Bibbins, Subculture Films.
Until the age of 6, Brian appeared to be a typical, “healthy” little boy. He was thriving in school and sports and was even skiing expert trails in Vermont.
Unknown to his family, Brian was born with adrenoleukodystrophy (ALD), an X-linked hereditary disease of the central nervous system. This rare disease manifests itself in boys in early childhood. The boys are born missing an enzyme that breaks down long-chain fatty acids that eventually build up and lead to a process that destroys myelin in the body.
Myelin is the insulating sheath surrounding nerve cells, enabling them to conduct impulses between the brain and other parts of our body. The demyelination impairs that process. The clinical course of hereditary demylinating diseases is tragic. Previously normal children are rapidly deprived of sight, hearing, speech, ambulation and the ability to eat. Brian lost his sight, speech and ambulation at the age of 7.
Despite the many challenges Brian copes with each day, he continues to teach much to many. Brian has an acute sense of hearing and is cognizant of the world around him. He has a busy life with his family and his own activities that he enjoys.
Some of Brian’s favorite activities include:
- Being a patient advocate for ALD
- Cheering on the Red Sox and New England Patriots with family and listening to golf with his Dad
- Spending time on the boat with family and friends
- Enjoying the company of his sister Kathleen and friends
- Enjoying visits by his brother Patrick and his sister-in-law Ainsley from NYC
- Sitting by the fire pit on the patio
- Spending some of the cold days of winter sitting on the beach in Florida and riding along the shore on a paddle board with his parents
- Participating in road races with his Mom and running friends
- Making cool things at the ceramic studio, Fired Up
- Listening to a good book, music, or video or taking a walk with loving caregivers
- Painting, using hand-on-hand technique with mentor, artist, Brendan Loughlin, Mom and friends
- Creating works of pottery with instructor Lydia Becker
- Working out with his therapists
Brian seems to bring out the best in everyone. He has a good sense of humor and because he depends greatly on his hearing, there is not too much that he misses. He is a 2010 graduate of Branford High School and lives with his family in Branford, Connecticut. Family and friends help Brian live an active life. Brian has taught those whose lives he has touched the importance of faith, love, family, friends, good health, kindness, and tolerance of others.
Brian is fortunate to have many positive experiences and great people in his life. We have learned to appreciate the silver linings that come with adversity.