Let me introduce you to our son Meir: When he is feeling well his smile can light up a room, he can cause the gloomiest person to smile, his warm hug is inspiring and a kiss from him is priceless.
Meir has never had a bite to eat or anything to drink in his entire life (he eats via a G-Tube), and although he cannot walk or talk, he still lets you know exactly what he wants. He laughs at what he thinks is funny and will make you say it a hundred times, and it's worth it, just to hear him giggle.
He still sleeps in a specialized crib ($2000) sometimes at the hospital) and has to wear a diaper, but if you put on his favorite video he will watch for hours (unfortunately for us it’s usually the same one over and over).
Meir has not gained a pound in three years, and his eyes produce no tears. He has a diminished pain sensation, and his blood pressure can vary wildly. But if you play his favorite car game with him, he will be your friend for life.
Without any notice, Meir can have fainting spells. He recently just had major surgery for a wound on his back and therefore has to sit on special padding so as not to cause any bed wounds. Someone must also listen to Meir’s chest every hour, as he can get severe pneumonia at the drop of a hat, but if you smile at him, he will lay his head on you and snuggle. That moment is worth all the extra hours of work and emotional struggles.
Our Meir, who thank G-D just turned seven (KA"H), has a very rare disorder (only 298 cases worldwide) called Familial Dysautonomia or Riley-Day Syndrome
This disorder affects his everyday life. Meir requires 24 hour care, and when he is not feeling well things can escalate quickly, and he often has to be rushed to the hospital where he can stay for a week to a month depending on the issue.
Dr. Barish Rubin PhD discovered the gene to this disorder in 2001, and in his lab at Fordham University he works on finding solutions to help these children every day. May G-D help him to find a cure, Amen!
Taking care of Meir is a full-time job. It requires the help of family, friends, nurses, doctors, therapists and organizations willing to help. We do our best to make sure Meir has everything he needs, but the costs continue to rise. His specialized equipment keeps him alive but also digs deep into our wallets. The incredible nurses to help Meir live need to be paid and the medical bills continue to stack up. Our job is to keep Meir happy, safe and as healthy as possible, a contribution to his medical fund would ensure that he receives all the help he needs.
-The Samuels' Family