Benjamin came into the world, to meet his eagerly awaiting family, with his twin sister on May 18th, 2015. Right away, Mom and doctors realized something was wrong. Benjamin was not moving or crying and couldn’t breathe on his own. After several tests and a long period of anxiously wondering what was going on, the cause was discovered. Ben had a rare, muscle disease called Myotubular Myopathy, a form of Muscular Dystrophy. While the diagnosis was intimidating and the prognosis was not optimistic, everyone learned to overcome their fears, accepting and adapting to Bens needs. Ben’s medical cares and assisting him with all activities of daily living such as Bathing, “trachea tube” care/change, grooming, feeding through a feeding tube, as well as breathing treatments could be tiring. No matter all of that, Benjamin’s parents enjoyed doing these things for him, caring for him, loving him.
As for Ben, he was thriving in this world. He loved watching Dora the Explorer, The Backyardigans, The Lorax (Dr. Suess), Giggle Bellies, playing with his toys, water baths, lullaby songs, and being surrounded by family that was motivated and supported him. He had his school teacher, Physical therapy, Occupational Therapy and Speech therapy regularly coming to work with him and prepare him for school in the future. All of us were optimistic with Ben’s progress and ability to stay stable with his conditions. His sisters would play with him, sing to him and watch movies with him. They love their brother, “Benji.”
Tragically, our little ray of sunshine suffered a severe, hypoxic event from which he was unable to recover; leaving his grief-stricken Parents, sisters-Candace and Brittany’s lives forever changed. We have been impacted by Ben in ways that we will never forget; his sweet spirit lives on in Heaven and forever in our hearts. Fly high Benjamin, until we meet to part no more. ~ Love your family!
Please consider monetary donations directly to the family for medical expenses.
The family requests that you wear a purple shirt and be comfortable when you join us in honoring “Benji’s” life.