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on Sep 18, 2009
I just wanted to say that my heart breaks for Chelsea's family or any family that has to watch their child endure such a disease as Lafora. Everytime you complain about the hardships that you have as a parent, take a step back and think just how lucky you really are.
I am a very close friend to Barb and I know that she and her two daughters have made a difference in Chelsea's life. It just takes one person to step up and do something. Barb has the intelligence, the warmth, the empathy and the love to make a difference! Hooray for Barb!
I am Barb's mom. Every summer I go out to visit Barb and I think it was about 3 or 4 years ago when I got to meet Chelsea, and I am in love with her. She is precious, and my 2 granddaughters love her completly and Chelsea's eyes light up the minute she sees them because they try to do what she wants them to do. They are away now attending college but they are close to home and they try to see her when they are home. My heart goes out to Linda and Howard, they are so loving and adoring to Chelsea. This is the first summer that I did not come to California and I miss the visit with Chelsea. Just tell Chelsea that Alyssa and Danielle's nana says hi and I love her.
Linda and I were best friends throughout our carefree high school years. Linda always had great strength of character, but little did we know how that strength would be tested. She is such a wonderful, courageous mother. Since the Gerber's moved fro LA to Danville, I've only been able to visit one time, but meeting Chelsea only once is enough for her to steal your heart. Even through all of her suffering she has a spirit that is infectious and a smile that brightens your life. Linda, Howard, Chelsea and Collin are continually in my thoughts and prayers~keep them in yours as well.
The story of Chelsea is heartwrenching. To see a teenager go from healthy and vivacious to sick and silent is a tragedy. Our community needs to reach out to the Gerbers and help them get through this. We are looking for volunteers to help rebuild a downstairs bathroom so Chelsea does not have to be carried up and down stairs daily, something dangerous both for her and her parents. Diseases like this take both a physical, financial and emotional toll on the entire family. Please contact me at 838-8885 if you are local and able to help.
Thank you for writing this article. I am happy to find that there is a community for support. I just lost my son Liam, age 23 on September 23rd, 2009. He was a beautiful boy who endured 11 years of this progressive illness. His father and I have felt alone for all these years. This is a very difficult disease process requiring constant adjustment to changing levels of cognition and physical function. Thank you to all those taking an interest in helping families live day to day. We all know too well that this disease is fatal... but our children die in pieces over years of declining health, new challenges and what feels like no hope at all. This process is a lesson in being. Liam understood what it is to simply be alive... in the last few years, he wasn't able to speak or do ANYTHING for himself, yet he still managed to laugh and smile whenever possible. I am still learning such grace. I can tell you that this lesson is painfully difficult. Help is what families need but they don't often even know how to ask or what to ask for. Basics such as food, home and yard assistance, and respite are all helpful but what we found gave us the most relief is when people would visit Liam. Liam felt isolated and deserved interaction and attention. These kids are still "in there" even though they have lost much of themselves. They NEED and desire social interaction with peers. They need to feel included and special... like they matter. As parent, we are most light hearted when our children feel loved and valued... visiting them just because always made Liam feel more special. Thanks again for raising awareness. Helping is VERY simple and rewarding beyond belief. These kids have so much to teach us.
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