Mindy's Autosomal Dominant LeTreatm
Donation protected
My name is Mindy, and I'm 46 years old. I have three amazing daughters: Sophia, Ava, and Mia. Over the past few years, I've been feeling sluggish and not as smart as I had always been. But I chalked it up to my age -- how do we know what our 40s are supposed to feel like?
But two days after my beloved Dad passed away, I developed stabbing headaches, which lasted 24 hours a day. After two weeks, I went to my doctor, who felt it was probably stress, but ordered a brain MRI because he didn't want to miss anything. The MRI came back abnormal, showing the amount of atrophy of an 80-year-old Alzheimer's patient. I went to see a neurologist, who ordered the proper blood test to diagnose me with
ADRENOLEUKODYSTROPHY
This is an untreatable, progressive genetic disorder, and my daughters are being tested right now. It attacks the brain, spinal cord, and adrenal glands. I am applying for Social Security disability, which will only pay about half of what I earn as a Director of Client Services at a marketing company. We currently rent a two-story house with a steep staircase, which is becoming quite scary for me to navigate, as my legs are increasingly number and my hands have quite a tremor.
I would like to be able to move to a one-story dwelling with a washer and dryer, as trips to the laundromat are very difficult with a cane. And I would like to raise the $15,000 necessary for experimental stem cell treatment, which may help to regrow some of the brain cells that I've lost. My girls are just 10, 12, and 14 years old, and I have so much more to teach them about life! There are no other treatments at this point, and I'm desperate to stay around for them. They still need their mom, and I want to be here for them as they grow up.
Any help you can give would be greatly appreciated. My current medicals bills are approaching $2,000, which I do not have. I would love to be able to play with my girlies, and to teach them the generosity and gratitude that my parents taught to me.
Thank you so much!
Mindy
But two days after my beloved Dad passed away, I developed stabbing headaches, which lasted 24 hours a day. After two weeks, I went to my doctor, who felt it was probably stress, but ordered a brain MRI because he didn't want to miss anything. The MRI came back abnormal, showing the amount of atrophy of an 80-year-old Alzheimer's patient. I went to see a neurologist, who ordered the proper blood test to diagnose me with
ADRENOLEUKODYSTROPHY
This is an untreatable, progressive genetic disorder, and my daughters are being tested right now. It attacks the brain, spinal cord, and adrenal glands. I am applying for Social Security disability, which will only pay about half of what I earn as a Director of Client Services at a marketing company. We currently rent a two-story house with a steep staircase, which is becoming quite scary for me to navigate, as my legs are increasingly number and my hands have quite a tremor.
I would like to be able to move to a one-story dwelling with a washer and dryer, as trips to the laundromat are very difficult with a cane. And I would like to raise the $15,000 necessary for experimental stem cell treatment, which may help to regrow some of the brain cells that I've lost. My girls are just 10, 12, and 14 years old, and I have so much more to teach them about life! There are no other treatments at this point, and I'm desperate to stay around for them. They still need their mom, and I want to be here for them as they grow up.
Any help you can give would be greatly appreciated. My current medicals bills are approaching $2,000, which I do not have. I would love to be able to play with my girlies, and to teach them the generosity and gratitude that my parents taught to me.
Thank you so much!
Mindy
Organizer
Mindy Reynolds Juiliano
Organizer
York, PA