My name is Jillian, I am 27 years old and I have suffered from an unknown degenerative neuromuscular disorder that has remained undiagnosed, misdiagnosed, and improperly treated for the past 25 years.
At least once per month I suffer from full catatonic episodes where my entire body stops functioning, though I remain conscious and aware of what is going on, I have no control of my body. I lose part or all of my vision, all of my muscles seize up and I am unable to move, though sometimes I experience slight tremors (similar to what you would see in an MS patient). My mouth and tongue go numb, and droop to the side (as if I'm having a stroke) and I am unable to speak. Sometimes I will choke on my own spit, being unable to swallow. The numbness feels like pins and needles amplified to excruciating pain.
More recently I have experienced regular symptoms of muscle pain and weakness: Some days I wake up and simply cannot walk. I am unable to support my own body weight, the pain is tremendous and I have been in and out of wheelchairs.
The muscle weakness has now spread to some of my internal muscles effecting such things as my eye sight, breathing, heart rate, and digestive system.
Recently I have seen a new doctor (Dr. Victor Pedro) who had discovered a new breakthrough in brain rehabilitation. Many of his patients experienced similar symptoms as me, and had also been undiagnosed and untreated.
I have since begun treatments with him, and he is the first Dr. who has been able to connect ALL of my symptoms to ONE answer: a brain stem injury I sustained as a child has caused a severe "Dysautonomia". He is also the first Dr. to say he can CURE me WITHOUT medications or surgery! I have been undergoing treatments with him for about 7 weeks now and have since seen many improvements.
FOR THE FIRST TIME IN MY LIFE I HAVE HOPE!
I am going to be married June 20th of this year (SO SOON! :-D) my future husband and I are trying to plan for our future and are hoping to be able to have children. But if I am not healthy, not only will my body not be able to handle a pregnancy, but if I have a newborn in the house and go into one of my catatonic episodes I will be unable to care for them...and I would never forgive myself if something happened to our baby.
Unfortunately I am on disability and have only Mass health and Massachusetts based medicare. This Dr. is located in Rhode Island, and so the treatment costs will be all out of pocket upwards of $12,000 total. My fiance and I will be putting together some local fund raisers to raise the money for this treatment (I am hoping to have it done BEFORE the wedding) it would be so amazing if I didn't have to worry about having a sick day on my wedding.
I heard about this website from a friend, and we would like to ask for your love, support, and donations to help me pay for these life changing treatments!
A link to information about my treatments:
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