Stickler Syndrome is a genetic disorder that affects the connective tissue of the body, leading to facial flattening, eyesight problems, and other symptoms. Monique Zimmerman-Stein was born with the Syndrome and had been receiving injections every six weeks to preserve what remains of her sight.
However, due to its inheritance rate, Monique has passed the disorder down to her two daughters, who are in danger of progressing along the same path that Monique has. On top of all this, the difficult economic times and the high out-of-pocket expense of Monique’s injections have forced her family to foreclose on their home, sell their possessions, and cash in their life insurance to pay their debts.
With things in such a state, Monique has made the decision to stop receiving treatment for her disorder so her daughters may begin receiving it. She is sacrificing her sight so that her children have a chance of avoiding her fate.
As parents, we know that there is nothing we wouldn’t do to ensure that our children grow up healthy and happy. Though the devastated economy continues to improve, the long-term consequences continue to affect us all. It’s a terrible thing to have to explain to our children that they must do without toys, or games, or certain experiences because their parents cannot afford them, but it is far worse to have to tell them that their own health is endangered through no fault of their own.
The way to survive troubled times is to pull together as a family, and remind ourselves that each of us is there to support the others. The one positive element that can be derived from this is that the true values in life will come more plainly to the fore — love, compassion, humility, kindness, generosity. As long as these are kept alive, we can make it through anything.
