Chelsea Gerber
Chelsea Gerber (1990-December 19, 2016)
Chelsea Gerber passed away on Monday, December 19, following a 12 and a half year struggle with Lafora disease. She was 26 years old.
There will be a Memorial Service on Thursday December 22nd at 1pm at Beth Chaim Congregation at 1800 Holbrook Drive, Danville, CA, 94506
For those of you who have lost touch with Chelsea, please go to our website at www.chelseashope.org to read stories about Chelsea and the research fund she inspired. Please consider donating to Chelsea’s Hope so other families and children can benefit from the research that is ongoing. If writing a check is easier for you,
checks can be made out to Chelsea’s Hope and mailed to:
Chelsea’s Hope, Post Office Box 348626, Sacramento, CA 95834
May Chelsea’s memory be a blessing.
BIOGRAPHY
Our daughter, Chelsea now nearly 23 years old, was diagnosed with Lafora Disease in 2005 at age 15. The ravages of this rapidly progressive and horribly degenerative disease have taken everything leaving her fully compromised both mentally and physically. Though, unable to communicate, care for her own basic needs, eat or compose thought, she is mostly content and and in no pain, which is a blessing.
Chelsea as a young girl was a spirited and joyful child. She loved life in a big way, was bright and energetic and curious about the world around her. She was well known for her enthusiasm and big laugh and wanted to participate in everything. Her love of school and learning always made her a favorite of the teachers, even though she was much too social and chatty in class. She saw the world though pure and non-judgmental eyes and made friends wherever she went.
Chelsea is our daughter, but she could be yours. Lafora Disease affects 1 in a million children and her story is really not much different than any other child represented on Chelsea’s Hope. All had big dreams, inspirations and deserve a better life than this tragedy.
Chelsea’s Hope represents HOPE for all children suffering from Lafora disease. As you read the diaries of our children, consider, “What if this were my child?”
We, the affected families, have come together as a community to make a difference by sharing our stories, raising awareness, and connecting with the world’s leading researchers to support finding a cure for Lafora disease.
Please help our children by donating today.
Thank you for your interest in Chelsea’s Hope Lafora Children Research Fund.
Linda and Howard, Chelsea’s parents
Parent Diaries
Welcome
Spring 2007
New Years 2008
February 2008
March 2008
April 2008
May-Summer 2008
Fall 2008
December 2008
March-Mid April 2009
May-October 2009
2010-May 2012
December 2012
December 2013
On December 22, 2005, a day we will never forget, my beautiful daughter, Angel, had her first tonic clonic seizure. By the following June, we got her diagnosis of Lafora.
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.
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.
Alexis Nicole Howard
Alexis was officially diagnosed with Lafora at 17-1/2 years old. It all started for us on a pretty Saturday in November of 2011. Alexis and her little brother, Scotty, where playing with Legos. Scotty came outside to us and said, “Sissy is on the floor not talking to me”. Our first response; tell her to be nice. His next sentence (at the age of 4) turned our lives upside down. He said, “But stuff is coming out of her mouth and she is shaking”.
We ran inside; she was convulsing. Neither of us had ever seen someone have a seizure before and we were looking for a one time cause. A 911 call and ambulance ride later, they could not find a cause; that entire day is etched in my brain. Three weeks later, it seemed as if everything was ok, she was at school (9th grade), when I got the call that Alexis was seizing. I rushed to her, about the same time the ambulance showed up and she was still seizing! We later found out that was her first static seizure, it lasted almost 10 minutes! We left the ER and scheduled an appointment with Neurology almost 3 hours away. We did numerous tests with no answers and started our medication trial period.
Within 6 months she had many more seizures and we began to notice different kinds of them. She was slipping in school and had difficulty remembering. Fast forward to about 6 months ago; Alexis was having so many seizures she was hospitalized for weeks to do constant monitoring and more tests and doctors discussed Progressive Myoclonic Epilepsy (PME) with us. We did what just about all parents would do, we googled it. That was a wake-up call that something was VERY WRONG! I looked at the different types of PME, even browsed this Chelsea’s Hope site. We prayed it would not be that! A few weeks later I got the call that the genetics test and biopsies Alexis had taken had indeed come back with a conclusive answer- LAFORA.
I had Alexis in the room with me as I cried my eyes out. I waited for my husband to get home from work before giving him the news. He immediately began scouring the internet looking for a cure. There isn’t one!!!! Could you image for even a moment? Even the most severe forms of cancer have some kind of treatment to give a ray of hope! We were not given even that.
Alexis has been homebound from school this entire school year and most of her friends have faded away just like her memories. She has gotten over 60+ stitches to her face in just the last few months. Sometimes her legs just give out on her. While other teens are getting drivers licenses and freedom, our daughter is getting a helmet and wheelchair. There is no doubt that without a cure, our precious daughter will just be a shell of herself- that scares the hell out of us. Because of Lafora’s rarity there is very little funding for it.
Chelsea’s Hope, Post Office Box 348626, Sacramento, CA 95834
