Welcome

It is impossibly hard to learn that someone you love is dying. It is a thousand times harder when you learn it is a child. It is ten million times harder when you learn it is YOUR child.

Instinctively, a parent tries to do everything possible to save their child’s life. And that is what we are doing.

Chelsea’s Hope is just what it sounds like: hope for Chelsea, hope for children like Chelsea.

If you see Chelsea in person, she looks fine. Unlike some diseases that have noticeable physical characteristics, Lafora ravages the mind. It DOES have a physical toll: the tremors, the seizures, the ataxia. But when you glimpse her in a restaurant or as you look at her photos, all you will see is a beautiful young girl with a radiant smile.

What we see, when we look at her photos, is a girl who is slipping away from us. We see the weight loss, the shaking in her body; we see her slipping away from us daily and we see her cry because she remembers things, in flashes of vivid memory, that make her stop in her track. She’ll remember a birthday party when all of her friends celebrated with her, she’ll remember kicking a soccer ball with all of her might; she’ll remember dancing with joy and freedom at dance class and sometimes, she’ll remember the day it all began to change for her- the day of her first seizure.

She is scared, she is precious, she is OUR child. But she could be YOURS.
Please help us try to find a cure for this insidious disease.

As you read through our site, look at the pictures of Chelsea; look closely. You will always see a child filled with love and life. But as you really look, you will also see the toll the progression of this disease is taking on her life. Chelsea is blessed with a beautiful smile- but behind that smile is a girl who is frightened because her body is betraying her; day by day this disease is robbing her of a future.

We hope that you will give Chelsea and kids like her HOPE. Your contribution could be the very dollar that helps the doctors find the cure for Lafora- a disease that promises death as it’s outcome.

We spend so much of our time living in the moment – in part because we are busy caring for Chelsea’s day to day needs and in part due to our increasing awareness that today is all we have.

As painful and heartbreaking as it is to have a fatally ill child, we are well aware of the many blessings and lessons that Chelsea offers us daily.
Howard & Linda Gerber

As time allows, we would like to share our thoughts and bits of our lives with you here in this online diary. Thank you for letting us share our world with you.

With HOPE,
Linda and Howard Gerber