I Support Stem Cell Research
My Children And Limbal Stem Cell Transplant Surgery... Both of my children were born with a very rare endocrine syndrome. Their bodies produced antibodies that killed their endocrine system one gland at a time..think of the parathyroid, the thryroid, the adrenal glands, the gonads, the ovaries, the pancreas. Each disease brought on unimaginable symptoms and had to be artificially regulated..all using synthetic hormones. I volunteered to donate to each child whatever they needed. Unfortunately, their bodies developed T cells which were fighter cells (think of stealth bombers) that would destroy the transplanted tissues..
Keeping these diseases in check was a nightmare. Too little Vitamin D would cause bone loss, seizures, muscle twitches. Too much vitamin D ( we are talking megadoses) would cause calcium to build up in the brains, kidneys and heart.
One of the side effects of this disease (which eventually took my daughter's life) was that my son lost his vision completely at age 10. Seriously painful ulcerated corneas. Highly photophobic so that he would have to lay in the floor of a car with a blanket over his head..special sunglasses, black out blinds..the list goes on.
We went to the most highly regarded institutions in the US. Nothing could be done..one day i was reading the newspaper and read about this revolutionary surgery being performed for autoimmune, chemical burn patients. it was called limbal stem cell transplant surgery.
I had an appt. with Bascom Palmer which takes months to get into. Something had to be done. My son was in excruciating pain. and here in my hands was the potential solution.
I asked our doctor, world renowned cornea specialist, if this was a possibility.."Yes", he says. I am the one that perfected the technique..would you use my tissue instead of cadaver to lessen the rejection rate...he got so excited..I was going to be the first mother to son (relative, living patient donor)
We get to the elevators after the visit and my mind is swirling with millions of questions..my son looks at me and said "thanks Mom..for doing this" I started crying right then and there.
my son's eyeball was removed and the scar tissue was removed. It encapsulated his entire eye. 3 weeks later, my surgery was scheduled. I was awake the whole time. I felt them cutting and sewing the 4 MM piece of tissue. Valium did not silence me. they grew my tissue ina petri dish until it was 10 MM big..they took the 3 pieces (1 had died) and sewed it onto my son's eyes..
Now here is the kicker..for the first time in over 12 years, he could see EVERYTHING. but guess what? The surgery had not been FDA approved and the hospital refused to let the doctor continue..the eye eventually rejected the tissue but for a short time, he had one good eye.
Keeping these diseases in check was a nightmare. Too little Vitamin D would cause bone loss, seizures, muscle twitches. Too much vitamin D ( we are talking megadoses) would cause calcium to build up in the brains, kidneys and heart.
One of the side effects of this disease (which eventually took my daughter's life) was that my son lost his vision completely at age 10. Seriously painful ulcerated corneas. Highly photophobic so that he would have to lay in the floor of a car with a blanket over his head..special sunglasses, black out blinds..the list goes on.
We went to the most highly regarded institutions in the US. Nothing could be done..one day i was reading the newspaper and read about this revolutionary surgery being performed for autoimmune, chemical burn patients. it was called limbal stem cell transplant surgery.
I had an appt. with Bascom Palmer which takes months to get into. Something had to be done. My son was in excruciating pain. and here in my hands was the potential solution.
I asked our doctor, world renowned cornea specialist, if this was a possibility.."Yes", he says. I am the one that perfected the technique..would you use my tissue instead of cadaver to lessen the rejection rate...he got so excited..I was going to be the first mother to son (relative, living patient donor)
We get to the elevators after the visit and my mind is swirling with millions of questions..my son looks at me and said "thanks Mom..for doing this" I started crying right then and there.
my son's eyeball was removed and the scar tissue was removed. It encapsulated his entire eye. 3 weeks later, my surgery was scheduled. I was awake the whole time. I felt them cutting and sewing the 4 MM piece of tissue. Valium did not silence me. they grew my tissue ina petri dish until it was 10 MM big..they took the 3 pieces (1 had died) and sewed it onto my son's eyes..
Now here is the kicker..for the first time in over 12 years, he could see EVERYTHING. but guess what? The surgery had not been FDA approved and the hospital refused to let the doctor continue..the eye eventually rejected the tissue but for a short time, he had one good eye.
61-69, F
