The heroes of Chelsea’s Hope that will not be forgotten

Chelsea Gerber

/by

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

Angel Shumate

/by

Angel Shumate – Sonora, California
(At peace with her brother, Kris, on November 15, 2012)

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.

Prior to the diagnosis of Lafora, Angel played basketball, softball and volleyball.  She was a color guard for Columbia school and helped the school sell anything they needed to sell.  She raised over $3000 for the American Heart Association, raised hundred of dollars for new band uniforms and was always willing to help someone less fortunate than herself.  She volunteered at the school library and in several classrooms as a teacher’s assistant.  She babysat for several neighbors and helped older and disabled members of our community.  She loved life and she loved going to church.  She had plans to join the navy and to serve her country.  She wanted to go to college and get her teaching degree and a degree in ministry as well.

Due to my disabilities, Angel is in foster care and is not getting the care she needs and deserves. Joseph is Kris and Angel’s brother and he has a learning disability and recently had a tonic clonic seizure, however the doctors will not test him.

My children deserve to have some hope for a future. They were both filled with love and life and kindness; they had planned on devoting their lives to a future of service.  Today, they are unable to help themselves, and I am unable to physically care for them.

My children are the joys of my life. I have dedicated my life to make sure they had a future teaching them what you give in life you will receive not expecting anything from any one just a joy that you were there to help others. Life is what you make of it.  I have to believe that there is a promise of a cure on the horizon.  Kris and Angel wouldn’t want this to be the fate or destiny of any other children.  Research is the answer to all of our prayers.

– Provided by Tricia, another grief stricken mother

Amanda Gellel

Amanda Gellel

/by

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

Alexis Howard

Alexis Howard

/by

Alexis Nicole Howard
(1996 – 2015)
Alexis Nicole Howard, 19, of Richlands on September 12, 2015 has lost her long courageous battle to Lafora.

Her family and friends were by her side as she earned her angel wings and drifted off to heaven. Alexis was born June 25, 1996 and graduated from Richlands High School in 2014. Her life would seem short to many, but those who were touched by her smile understand that happiness far exceeds the time in which one lives. Alexis will be especially remembered for her gentle smile, warm hugs, giggles, quick wit, sarcastic comments, random licks and loving music. As Lafora began to make her weak, she stayed strong by greeting each day with a smile; constantly reminding us of the preciousness of life. She enjoyed writing screen plays, listening to music, attending rock concerts, playing Sims, watching the Walking Dead/Worlds Dumbest and seeing the Phantom of the Opera on Broadway.

Alexis’ passion was simply being with her family and friends; especially her little brother Scotty. Alexis is survived by her loving parents, Scott and Laurie Howard of Richlands, NC; her beloved little brother, Scott Michael Howard, Jr.; grandparents, David and Cheryl Dillahunty and William and Della Howard; best friends, Kari Nelson and Autum Meal; and all her friends that have been touched by her sincere and gracious smile.

Thank you all of Chelsea’s Hope for standing with us on this journey.  We can feel each of your strength hold us up right now.

With Hope, the Howard Family

Biography

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.

As a family, we decided to share everything with Alexis. She is aware (most days), what her future holds. She has made her own Bucket List, filled out DNR forms, and is currently working on her living will. Some days she asks if she can get married or have babies, live on her own, drive, or even take a bath with no one observing her. Cruelly, the answer to all of those questions right now is no. Our son does not understand what is happening to his sissy, even family seem to want to ignore what is happening, which if I could, I think some days I would do that as well. We have had many opportunities of late to begin checking off some of her bucket list and we are currently working with Make A Wish.

To the unassuming reader that happens across this post, I simply ask you to do at least 1 of these 2 things: Donate to Chelsea’s Hope, help all of us affected by this horrible disease to find a cure. If you do not have the funds or are unsure, I ask you, no matter what your faith or beliefs are, please PRAY for all these children and families.

We have no choice but to put our child’s future in your, a strangers hands. I will post updates when time allows.

Til then,
The Howard Family
Scott, Laurie, Alexis and Scott Jr.

Parent Diaries

December, 2013
March, 2014
September, 2014