Emmalynn's trip to Dr. Helbig


After 5 years of searching for answers, we finally received a diagnosis in November 2016. Early Infantile Epileptic Enchephalopathy, 31. That's the very long name they gave us. EIEE, 31 is the disorder that has taken over my daughters life. This disorder is the reason she is non verbal and can not walk. It's why she has Autism, sensory processing disorder, severe intellectual and developmental delay, auditory processing disorder, cortical vision impairment, and many other health issues. The number one issue.... seizures. Seizures that do not respond to medication. Seizures that interrupt her life every day. Wake her up at night. Cause her to harm herself. Seizures that are getting worse as she gets older and are causes more brain damage. Seizures that could end her life at any moment. EIEE, 31 is extremely rare and is terminal. We were told there were only 4 other cases known. I have found a few other families who have children living with this disorder so I know there are more than 4 other cases, just not sure how many. During my long hours of research on this disorder, I found a doctor in Philadelphia who specializes in EIEE. He has been doing research on the gene mutation that she has, DNM1, since 2014. I reached out to this doctor and he has agreed to see Emmalynn in clinic. Since her disorder is so rare, her doctors in Houston haven't been able to help. They don't know how to treat her. I refuse to accept that so I'm asking for help from everyone who has been following Emmalynn's journey. Please help is get to Philadelphia to see Dr. Helbig. I truly feel he is the only person who can help. Medicaid should pay for the appointment but since Emmalynn needs 24 hour care, I am unable to work outside the home. So, I'm asking for help to cover the travel expenses. My mom will be going on the trip with us. We will be renting a car and driving since I'm pretty sure putting Emmalynn on a plane would be a complete disaster. I've calculated the cost of the trip for 7 days. 2 days to get there, 2 days to drive back and 3 days in Philly for the appointment and any other test and procedures they may want to do. Any little bit helps. Please help me get my baby girl to this amazing doctor. I have to do this for her. Even though her diagnosis is terminal, I will not stop fighting. We will beat this! Thank you.
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Donations ()

  • Fredrick Whitehead 
    • $20 
    • 26 mos
  • DOTTIE NORTON 
    • $50 
    • 31 mos
  • Anonymous 
    • $30 
    • 31 mos
  • Lani Ashworth 
    • $50 
    • 31 mos
  • A R 
    • $10 
    • 31 mos
See all

Organizer

Ashley Neal 
Organizer
Humble, TX
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