• Link to X
  • Link to Facebook
  • Link to Instagram
  • Link to LinkedIn
  • Link to Youtube
  • Donate to fight Lafora disease!
  • Contact Us
info@chelseashope.org
Chelsea's Hope Lafora Children Research Fund
  • What is Lafora Disease?
    • About Lafora Disease
    • ICD-10 Codes for Lafora Disease
    • Lafora Disease Symptom Checker
    • Lafora Disease Therapy
    • Lafora Disease Clinical Pipeline Progress
    • ION283 Safety Study
    • Family Stories
  • About Us
    • Chelsea’s Story
    • Leadership Team
    • Advisory Board
    • Contact
  • News
  • Resources
    • For Families & Caregivers
      • Newly Diagnosed
      • Tips for Lafora Disease Families
      • Bereavement Support
      • G-Tube Tips – A Mother’s Perspective
      • Lafora Clinical Network Registry
      • Refer Your Clinician to the Registry
    • For Researchers
      • Lafora Mutations Database
      • Lafora Canine Registry and Database
      • Apply to Join the Clinical Registry
  • Events
    • 2026 Lafora Science Symposium
    • Courage in Care: Lafora Caregiver Series
    • Lafora Disease Roundtables
  • Get Involved
    • Ways to Give
    • Volunteer
    • Join Canine Registry
  • Click to open the search input field Click to open the search input field Search
  • Menu Menu
Amanda Gellel

Amanda Gellel

September 24, 2017/by Chelsea's Hope

BIOGRAPHY
Our youngest daughter Amanda also has Lafora. Growing up Amanda was full of life. She is the youngest of three girls, so as you can imagine she was a little spoiled!! She loved swimming and rollerblading and she loved art. Amanda also loved to write, so any free moment she had she would be sitting quietly writing in her journal.

In 1999 we got the devastating news that Amanda also had Lafora.

Once we got the diagnoses her doctors put her on a ketogenic diet which was meant to minimize the frequency of seizures. 

Since that time Amanda has continued to be on this diet along with medication.  We feel like the diet has helped our daughter a great deal but the disease has still taken its toll.

Slowly but surely Amanda started loosing the ability to do all the things she loved doing the most, no more swimming or rollerblading, but most tragically no more drawing or writing.

Just like her sister before her the everyday functions became impossible.

 It is now nearly 10 years later and Amanda is a very sick young lady.  We hope and pray every day that we are granted a miracle not just for our daughter but for all the brave children fighting this devastating disease.

Provided by Amanda Gellel’s Family

Share this entry
  • Share on Facebook
  • Share on X
  • Share on WhatsApp
  • Share on Pinterest
  • Share on LinkedIn
  • Share on Tumblr
  • Share on Vk
  • Share on Reddit
  • Share by Mail
https://chelseashope.org/wp-content/uploads/2017/09/CH-children-200x200-amanda-gellel.png 200 200 Chelsea's Hope https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png Chelsea's Hope2017-09-24 18:51:092022-02-12 23:14:42Amanda Gellel

About Chelsea’s Hope

Chelsea’s Hope began as a website in the fall of 2007 to share Chelsea Gerber’s story with family and friends. A 501(c)(3) organization since 2009, we have made an impact by raising awareness, connecting families worldwide, funding research, and maintaining hope. Our mission is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments. [Read More]

Children of Chelsea's Hope

  • Abdul Ali

  • Adela Richer

  • Alexis Howard

  • Alexis Rodriguez

  • Amanda Gellel

  • Amarah Ahmed

  • Angel Shumate

  • Angelina Lati

  • Anissa Merriam

  • Carmen Anastasio

  • Chelsea Gerber

  • Chelsea Marie Sinclair Merrill

  • Daniela Cerracchio

  • Diane Victoria Gellel

  • Douglas Jacob Lucken

  • Elisa Brackin

  • Emine Malaj

  • Gigi Breadiy

  • Grant Pinder

  • Jake Buie

  • Janet Lee Harris

  • Janine Lee Rodriquez

  • Jessica Faludi

  • Jessica Masoner

  • Jessica Nicole Ambroe

  • John Sharp

  • Kain Brody Unzicker

  • Kelsey Anne Harris

  • Khari McCrary

  • Kris Shumate

  • Kristen Rice

  • Lucy Terceira

  • Mallorie Taylor Lindo

  • Mathilde Daubjerg

  • Mathys Lucas

  • Matthew DeSimas

  • Mia Vivian Clement

  • Milana Gajic

  • Rebecca Cotton

  • Robin

  • Shamoan Ahmed

  • Sonam Ahmed

  • Tatjana Gajic

  • Taylor Nicole Mankins

  • Thomas Barter

  • Tracy Anastasio

  • Zaina Zaid Nemer

The mission of Chelsea’s Hope is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments.

Chelsea’s Hope Lafora Children Research Fund is an IRS 501(c)3 nonprofit organization. EIN: 27-1008382

Location imageChelsea’s Hope c/o Dr. Donohue

976 Maywick Dr.

Lexington, KY 40504

info@chelseashope.org

Use ICD-10 code G40.C for Lafora.

    • Follow us on
    • Facebook
    • Instagram
    • Twitter
    • LinkedIn
    • YouTube
    • TikTok
ION283 Safety Study
Copyright © 2017-2026 Chelsea's Hope Lafora Children Research Fund. All Rights Reserved.
  • Home
  • News
  • About Lafora Disease
  • Donate
  • Contact
  • Privacy Policy – Other Policies
Scroll to top Scroll to top Scroll to top