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Parent Diary

 

Meet the Children of
Chelsea’s Hope

 

In Memoriam

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

Chelsea Gerber - Danville, California

As we watch our napping 23-year-old beautiful, soulful, pure daughter Chelsea we can’t help but feel so desperate. Her life and ours has been rocked to the core since this dreadful disease has begun ravaging her mind and body, just a few years ago.

Chelsea was always a bright, energetic and independent young girl who loved school, running, dancing, playing sports, swimming, hanging out with friends, going to the movies, and all that was fun.

She was a happy and very spirited little girl who lit up the room with her radiant smile and contagious laughter.

Today her once strong body is becoming more frail as each day passes. At barely 100 pounds she no longer has the strength to lift herself out of bed and she needs assistance when walking. The ability to adequately feed, dress, and bathe herself has been completely taken away. Her quick wit and ability to endlessly chatter has been dulled so she can barely understand the conversation around her. She needs anti-seizure medication multiple times a day to prevent her body from continuously seizing. Her once agile, athletic, sculpted body that allowed her to dance freely and play sports with determination has been replaced with an occasional memory stirred by photos.

Our family’s world has been altered so much by this disease; not only has it affected Chelsea physically and cognitively, but everything that was normal family socializing and entertainment has ceased to be. The joy of friendship that Chelsea shared with so many kids has essentially disappeared for her, this being one of the most profound sorrows for her.

From what was once an eager young girl wanting to experience life at it’s fullest, Chelsea today carries the sweet demeanor of a very young child who is sensitive, joyful, pure of heart, and unabashedly compromised. She questions what is happening to her mind and body and doesn’t understand. On the days when Chelsea is feeling good it is wonderful. She is obviously very compromised compared to her previous years (prior to diagnosis) but we celebrate all the small joys that life has to offer and we try to live each moment to it’s fullest through laughter, silliness and many, many tears.


October, 2009
“Rare Genetic Disorder Fundraiser in Alamo this Sunday: Danville mother starts foundation to help daughter suffering from Lafora”

Diablo Magazine
by Bethany Souza

diablo magazine

“Danville resident, Chelsea Gerber, was a normal teenage girl. She played soccer, loved to dance, and had just started attending Monte Vista High School when everything changed...”
[Read the article in Diablo Magazine]

September 18, 2009
“A lifeline for families struck by a rare adolescent disease”

Danville Weekly
by Susan Astbury

“Chelsea Gerber was a vivacious adolescent who loved soccer, dance, baseball, band and hanging out with her friends. “She just wanted to do it all,” recalls her mother, Linda Gerber. When Chelsea, now 18, was in middle school, Linda noticed that she was having small cognitive issues.”
[Read the article in the Danville Weekly]

July, 2009
Local ABC News interviews about Chelsea's Hope and Lafora

ABC News

abc7 news

[Watch the Live Interview]
[Watch the Extended Interview]

June 2009
“Rare disease inspires Danville family to share information”

Contra Costa Times

“DANVILLE — When doctors told Linda Gerber that her daughter, Chelsea, might have Lafora disease, a rare form of epilepsy, they also told the Danville woman not to bother looking on the Web for information about it...”
[read the article from the Contra Costa Times...]

May, 2009
ALIVE Magazine

Alive Magazine

“Imagine an active and vivacious teenage girl who is as healthy and vital as her classmates...And imagine that this girl, at the age of 14, suffers her first grand mal seizure...”
[read more]

November, 2008
“Charitable Giving From the Heart”

J Weekly
Kahn Family

“In the simplest terms, it is do-it-yourself philanthropy.

With a sum that could be as modest as $5,000, one can establish a donor-advised fund to benefit the cause — or causes — of one's choice...”

For more about Sarah and Rachel Kahn’s Charitable Fund: [Read the article]


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