As a little girl, I expected that my life would go smoothly, happily. I expected to have a better life than my immigrant parents who came to America after their entire families were exterminated by Hitler. I expected to have a great job, husband, and kids, whom I would raise in good health. I did not expect to have four children with muscular dystrophy.
Tziporah, now 21, began falling often at 11. She was diagnosed with CMT, a type of muscular dystrophy. Currently, she can barely walk. Tzvi, 18, was the next one to start falling; his degeneration, as he is male, came quicker. He hasn’t walked for 4 years, confined to a motorized chair. Rivka, 23, called from her gap year, crying, because she had started falling too. She currently walks with a pronounced waddle, and falls frequently. Racheli, 15, started falling in first grade. She is currently confined to a motorized chair at school, and only walks at home, short distances, slowly, if my husband or I hold her hands, as one would with a toddler.
We all endure hellish struggles just to get through each day. Besides their walking/falling issues, those that still walk cannot transfer to a chair, toilet, or their own beds unassisted.They have enormous difficulty getting in and out of cars. My son, at 5’9, and about 165 pounds is the most difficult to transport because my husband and I can barely lift him in and and out of our car.
I recently went to the neighborhood movies, where my son and his friends were coincidentally going to catch a different movie at the same time. On a bitterly cold night, ice and snow everywhere, my son and I left simultaneously, he in his scooter, I in my car. I drove parallel to him as long as I could. When I had to turn down the next street. I cried , knowing that my son was out in the frozen night, and would be for another 20 minutes, while I, his mother, GOING TO THE SAME PLACE couldn’t take him.
We rarely travel as a family, as we cannot maneuver everyone into the van; my son rarely goes anywhere- malls with friends, baseball or basketball games he loves, because we can’t lift him. Medical expenses prevent us from affording a ramp-van. Winning one would improve all our lives.
Click here to vote for Esther Herzfeld for a chance to receive a free handicap vehicle equipped with the adaptive equipment they need to live Life Moving Forward.