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Meet the Children of Chelsea’s Hope

Chelsea’s Hope Families
Read their stories of strength and hope in the face of Lafora

In Memoriam

“Those we have held in our arms for a little while, we hold in our hearts forever.”

Amanda Gellel

Our friend Amanda Gellel passed away on May 28, 2009. Her loss will be immeasurable to her family and friends and we all wish her family the best.

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

 

Amanda Gellel