My younger sister Emma has been sick since the day she was born. She was born with a hole in her heart as a baby and then suffered a terrible reaction to her MMR vaccine. She developed encephalitis and had to relearn how to talk and walk again. At the age of 12 she had her first grand mal seizure and it took years to find the right medicine to control them. Her childhood encephalitis also led to balance and coordination issues that prevented Emma from participating in many activities as a child. Due to her extreme reaction to the MMR vaccine, she wasn’t able to receive any other vaccines after that so any time a child had chickenpox she had to stay home from school. My parents lived in constant fear of Emma getting sick. For years we didn’t know why she had these health issues. We thought she just had a sensitive immune system and also had developed epilepsy. It just didn’t make any sense why horrible heath issues continued to plague her life. 


Rock bottom hit quickly last February 2018.  My sweet sister who was about to finish her final semester at her beloved TCU woke up one morning at the age of 22 unable to speak or swallow. Three hospitals later and still nobody could diagnose her and her health continued to decline. Her hands also had started to become weak along with her legs and trembled when she tried to walk or even pick up her cell phone. She was unable to communicate in any way, trapped with all of her thoughts and feelings and no way to share them with the outside world, anybody’s living hell. We thought we were going to lose her.


Last month we finally got an answer. Genetic testing at the Mayo Clinic showed she has a very rare genetic mutation called ATP1A3. It is incurable. Emma’s life currently consists of endless doctors appointments along with speech and occupational therapy. Due to the fact she is severely immunocompromised she cannot work and her plans to become a teacher and work with young kids is never going to be possible. What she has dealt with since losing the ability to speak has been traumatic and heartbreaking to watch. When out in public she will run to the bathroom to hide while the waiter takes our order. When she tries to speak, people assume she is mentally handicapped or deaf and either talk down to her or try to use sign language. This young, bright, vibrant and insanely talkative young girl went from having her entire future in front of her to being a prisoner in her own body and mind. 


There is, however, an amazing opportunity for my sister to regain her speech thanks to a group of doctors in Canada who have decided to use my sister as a case study. Unfortunately the treatment was not approved in the United States so they have to go to Vancouver for treatment and pay for said treatment entirely out of pocket.The reason for this Go Fund Me page is that my parents have already gone through their life savings to pay for therapy and treatments not covered by insurance. My mother is her full time caregiver and unable to work and my father works around the clock trying to make ends meet and pay for all of these expenses but it is simply too much and they need help. 


This case study and treatment also has the potential to help other people with a variety of speech problems including MS, Parkinsons, and stroke victims to regain their ability to speak as well. The expenses for Canada are over 100k including treatment, flights, and living expenses.  Emma has been through hell and if I can help to raise money to take the financial stress off of my family that is something that I am happy to do. 


My sister is the strongest person I know. She is my hero and she just wants a shot at a normal life that includes being able to talk again. The last year and a half feels like a nightmare that we can’t wake up from. Whenever I see my sister, I still expect to hear her sassy voice and comebacks and sarcasm that I’ve known from her all my life and what comes is a sound that I don’t recognize and that isn’t her true voice and it is crushing. My family is so optimistic that through this treatment she can not only be helped herself but also it can ultimately help others and expand research and treatment options for others that also have this rare genetic mutation.


So please share this with all of your friends and family across social media and If you are able to contribute anything at all, my family and I would greatly appreciate it! My sister’s middle name is Hope and I don’t think that’s a coincidence; I have unwavering hope that she will recover and contribute amazing things to the world.