Florida, September 29: A mother with a rare genetic disorder causing her to go blind has been forced to refuse treatment so her children, also affected, can continue to get expensive medical care.
Monique Zimmerman-Stein, 48, lost her right eye at age 16 to Stickler’s syndrome. She can now only see enough light through her left eye to tell night from day, the St Petersburg Times reported.
Ms Zimmerman-Stein will no longer get treatment to preserve her last slice of light. The injections that might help cost $US380 after insurance, and she needs one every six weeks.
That money will be instead spend on her daughters’ care.
“That’s a choice any mom would make,” she said.
Ms Zimmerman-Steins’ youngest daughter Aliyah, 10, almost died at birth and needed a tracheotomy for six years. Dava, 13, has arthritis in her spine and lost the sight in her left eye.
Even though the family has medical insurance it covers only 80 per cent of most bills. They are left to foot the balance for the expensive tests, treatments and medications.
In the last decade, the Steins have racked up $US500,000 in bills not covered by insurance, the Times reported.
They took out a second mortgage on their house, which they later lost to foreclosure. They sold furniture and cashed in life insurance as well as getting their creditors to forgive some debt.
Zimmerman-Stein’s brother gave them $50,000, all he could afford.
But the bills keep flooding in and the phone keeps ringing with creditors wanting their money.
“I know I won’t ever see again. I’m not even asking for that,” Ms Zimmerman-Stein said.
“I just don’t think we should have to deal with constantly being harassed.”
No one should have to make such sacrifices, said husband Gary Stein.
He hopes US President Barack Obama’s health plan to set a limit on the amount of money people who have to pay out of pocket for health care will include a public option that won’t exclude those with pre-existing conditions.
At least, he said, the Government needs to cap out of pocket expenses.
—Agencies