Another Perspective
A message from Chelsea's Hope Co-Founders
Several years ago when we conceived the idea of Chelsea’s Hope, we HOPED we would be able to make a difference. Of course, we wanted to pave the way for a cure for Chelsea, but we knew that research takes time and Lafora marches to its’ own beat. Our vision for Chelsea’s Hope was to become a tool and a resource for families, for diagnosticians and for people who had not heard of Lafora. We hoped that we could raise both money and awareness and impact the quality of life for those who suffered from Lafora as well as their families. Beyond our wildest dreams, Chelsea’s Hope has flourished. Despite an economy that has been lagging for years, we have raised a good amount of money. We have been able to support the research of two leading doctors at two world renowned universities, we have connected families from all over the map- from the Jersey Islands to Sweden, from the UK to Pennsylvania and our families have become one large, caring and supportive community. We have often wished we could make an impact with more expediency; we have often wished that we could shout the word Lafora on national television so that more people would be aware of the destructive nature of this disease. But things like this take time, and, like most things in life, things happen with a purpose, when they are supposed to happen. A friend of Chelsea’s Hope asked if he could submit our design to Toyota Racing Sponsafier. Thinking that many thousands of submissions would come in and that we would be a small part of that process, we agreed. Not only did we make it to the top ten round, but we were thrilled beyond belief to find out we were the Grand Prize Winners. Not knowing what to expect, we jumped on a plane and flew to Charlotte for our very first NASCAR race. The people from Toyota Racing were caring, supportive, empathetic and kind. When we returned, we thanked them for their generosity and asked if we could bring the Chelsea’s Hope car to the racetrack near our home. When they called to say they would bring the car out, they also offered to support Chelsea’s Hope with a major fundraising event. This is way beyond the parameters of what Toyota Racing committed to doing for the winning car. This generosity has moved us beyond belief. We are reaching out to people who may not ever have heard the word Lafora before. We are able to have an evening of magic and miracles because one company, Toyota Racing, has seen the relentless and insidious damage that Lafora creates. We will be forever grateful to Toyota Racing and the people at Saatchi LA who are giving us this chance to bring hope to wine country, a chance to make miracles under the stars, a chance to help our Race for Research. Please join us if you can on June 24th. Read more about our event please and, if you can’t attend in person, please consider making a donation. And while you are at it, check out the information about Toyota Sponsafier 4. It could change the course of your foundations future. Always with hope, Linda Gerber and Barb Goldsmith
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2nd Annual Fundraising Event, September 2010
I was overwhelmed with emotion at our second annual Chelsea's Hope Fundraiser. For the first time, both of the world's leading Lafora experts participated in our event; in addition to the doctors, we were able to bring together several of the Lafora families represented on our site. When Linda and I first considered forming our foundation, our hope was to raise funds, raise awareness and attempt to connect with other families afflicted by Lafora to share information and support. In just over 3-1/2 years, we have far exceeded our own expectations. The day of our fundraiser blazed with both extreme heat and intense excitement. Our venue was beautiful. The Blackhawk Auto Museum gleamed with the reflection of expensive cars and the anticipation of the day. Our fundraising committee outdid themselves with the raffle items they selected, the decor they lovingly created and the organization of the event. The highlight of our event was providing families with the opportunity to share some private time with Dr. Escueta and Dr. Minassian. The doctors were able to discuss their respective research and their hopes for the future; the parents were able to share information about the current conditions of their child. This is the first time that there has been an organized effort to bring multiple families and doctors together under the umbrella of a Lafora event. This disease is so rare that for years families not only struggled with the ramifications of the disease, but they also struggled with the sense of isolation that battling a rare, and virtually unknown, disease creates. There was almost no one to talk to who truly understood the afflictions of this disease... UNTIL NOW! Twelve parents, representing seven families, sat around a table, listening to other parents discuss the needs of their respective child, talking to the doctors about their concerns and joining together to rediscover hope for their children's futures. We raised a great deal of money to support the doctors' ongoing research and we shared information with the supporters of our foundation. It is an understatement to say that there was not a dry eye in the house at the debut of our documentary film. Many of the families in attendance spoke to the attendees about their fears, their child's progress through the disease and the need to raise funds to help the researchers' race for a cure. As one family so eloquently stated, Lafora does not only kill the patient, it also kills the whole family. Each family had one thing in common: the wish to save their child's life. To do so, it is a must that we assist the researchers by both raising funds and awareness about the horrors of this disease. As the evening progressed, old friends made large contributions as our guests vied for raffle items in an attempt to raise hope by raising funds. It is our desire, and one of our many goals, to insure that no other child, no other family, has to hear the diagnosis of Lafora. The journey these families are taking is a journey no family should ever have to experience. To lose your child, day by day, to a disease that ultimately robs your child of everything that makes a person unique and alive, is horrific. To know that a disease has the potential for a cure and the only thing preventing that cure is research money is just wrong. Here are some of our realities: Hope is free, love is abundant, and the children stricken with Lafora will lose their battle with this disease if we do not help the researchers by raising funds. That is our truth. Please help us. Glance through the photos taken by Cheryl Bigman and look at the faces of hope. Put yourself in the position of these families and ask yourself if there is more that you can do to help us help our children. Can you ask your employer if they do matching funds? Can you pledge an ongoing amount of money, monthly or yearly? Can you give up one cup of coffee three times a week and send us those dollars instead? Can you send information about our site to everyone on your email list so that they learn about us and, possibly, send us a check? We, our children, and we, the families who speak for our children who can no longer speak for themselves, ask for your help in whatever form you can offer assistance. And to those of you who joined us at our spectacular and moving fundraiser this year, we thank you from the bottom of our hearts. You helped us raise the bar of HOPE. Our fundraiser not only raised funds but it allowed us to join hands and to believe in the power of possibility. We all thank you for keeping HOPE alive. Barb Goldsmith To view photos from our event, please go to http://www.cherylbigmanphoto.com Click on the "Clients" menu tab and choose the "2nd Annual Chelsea's Hope Fundraiser" gallery. No password needed. "A Step Removed"I’m a step removed… I wonder how many people really understand what it is like to be the primary caretaker of a neurologically compromised young adult. I am a step removed; I spend a lot of time with Chelsea and her family. I see how much work there is involved in not just caring for her, but loving her through this time. I watch as they care for her- minute –by- minute, hour by hour, day by day, through the night, seven days a week. We all use the term 24/7 when we discuss the rigors of our daily life. But 24/7 is reality for parents of Lafora children. The term ‘neurologically compromised’ is such a cleaned up version of Chelsea’s life. Chelsea is beautiful, precious, precocious and deserving of a better fate; Chelsea IS neurologically compromised but when observed on a day to day basis, when one is living through it and trying to separate the work from the love, the rigors from the rewards, it is no longer as sterile as the words suggest. Caring for Chelsea is a 24/7 whirlwind of constant work. The rewards are plentiful, of course; a smile that lights her face from within, a giggle that escapes from her mouth, a hand inserted within yours, a sigh of contentment when she is fed something that tastes good. But the work is endless, backbreaking and terribly frustrating. I am not the mother of a neurologically compromised daughter. I am a step removed. But this is what I know and this is what I see! I see an 18 -year old girl who is no longer able to attend to her most basic needs. For some reason, of all the things that have happened to Chelsea, this saddens me so much. Even a year ago, Chelsea was keenly aware of her modesty and asked that her privacy be respected. Her bathroom needs were private and while we would assist her in getting to the bathroom, we would respect her desire to be left alone while she attended to her needs. Today, she wears a pull-up- and is rarely aware of her bodily functions. A year ago, at her 17th birthday party, she looked like a princess and danced- with everyone- like a disco queen. She didn’t stop smiling- and though compromised in many ways- she was so unbelievably happy that everyone celebrating with her was able to bask in the glow of her obvious happiness. This year, her birthday came and went; acknowledged by a few of us with a cake and a treat and some quiet hugs. She barely knew that it was her special day. I am a step removed and I wonder, could I do what Linda and Howard do on a day- to -day basis? Could I sleep with a baby monitor in my room every night, my ears and thoughts attuned to every sound that comes from her room? Could I physically lift her and carry her from bedroom to bathroom-back and forth multiple times? Could I physically lift her and dress her and put in the time to not just clothe her, but to respect the buried within fashionista that she once was and make sure that her clothes are ‘cute’ and not just easy to put on? I ask myself, could I take her up and down the stairs- or would I choose to just keep her in her room, day after day? Could I remember that one of her favorite foods is French onion soup and spend hours making it (hours that are crammed in between the constant caretaking) so that she can taste something that she once loved? The reward could be as small as three little slurps, but the real reward is that little smile she gives when she likes something. Could I haul her in and out of the shower, wash her hair and brush and dry it so that it is not only clean, but also looks cute- again, remembering the joy and pride she had in her appearance? Would I spend 30 minutes of what could be my free time, painting her finger and toe nails- not so much because she notices now, but because she used to notice and love the girly things? And would I even bother trying to shave under her arms and legs? It probably doesn’t phase her anymore- hair on the legs, hair under arms! Would I remember to roll on the deodorant daily and make sure that I slather her skin with moisturizers that smell great and keep her skin soft? Or would I tend to the basic needs and let the rest go so I could sit a few minutes longer and put my feet up for a much needed-break? I know that when my kids were toddlers, I couldn’t wait until they were potty trained so that I could be done with diapers and they could take over their own bathroom duties. How would I feel having to change my own 18 -year old daughters pull-ups? I want to believe that I would be as caring, patient and loving as Linda is, but it is demanding in so many ways. I see it often as I spend a lot of time with the family, but I am a step removed. And these are just some of the physical tasks required. I’ve not even mentioned how often the sheets that are soaked through need to be laundered, the teeth brushing, the flossing, the tweezing and the feeding-spoon by spoon, that is required. Then, of course, there is the medication schedule- some of the meds administered by mouth, some through her g-tube that needs to be flushed and cleaned and properly cared for. I am a step removed from being a 24 -hour a day on call nurse, friend, mother and entertainer. I get to hear- the next morning- over a phone wire-about how many seizures Chelsea had the night before, how many times she soaked through her bed, how many moments of unknown fear overcame her as her mind deluded her into believing that worms or snakes were crawling all over her. I am a step removed and my heart aches-daily- and because I am a step removed, I get to come home at night and go to sleep without a baby monitor winking at me, without the fear of seizures, without the alarm ringing to remind me of a medication dose. I am a step removed from taking fulltime care and giving fulltime love to a neurologically compromised teenager. Her body is that of an 18 year old; her mind operates on a totally different level. Her biological needs are those of an 18 year old, her physical abilities, like those of a young toddler. She no longer can walk unattended-though she has moments of jumping up from the couch and taking off like a bat out of hell- but that is no safer then allowing your toddler to wander near a fireplace or a steep staircase. I am a step removed and I see the constant vigilance that is required to be the caretaker and love-giver, the nurturer and the nurse to a neurologically compromised teenager. The job is endless, sometime thankless, and most certainly, back-breaking. I am a step removed and there are days I come home and cry my eyes out. I live in constant awe of Linda and Howard and all the other parents of Lafora children and all the parents of other children who are neurologically compromised and whose lives are now totally altered. I live in awe of how love for a child overtakes physical exhaustion and how hope is stronger than fear. I live in awe of parents who can smile through the pain and who manage to get up every morning and start the whole process over again- of caring and nurturing, of loving and providing and go to bed physically spent but emotionally clear that they are the life support that keeps their child going. I am a step removed; I am the co-creator of Chelsea’s Hope and a friend of Chelsea, Linda and Howard. We need your help. We need to raise awareness about this disease; we need to help the doctors and researchers race for a cure before the disease wins the race. Donate what you can, and if you can’t help out with funds, please pass the information about this site on to your family, friends and neighbors. Thank you so much, Barb |
Life Lessons We entered Chelsea's life after she was diagnosed; after many of her long time friends had disappeared. Admittedly, it is hard to consider friendship with someone who is seriously ill, someone who has suffered from some loss of cognition. What began as a gift to Chelsea, however, turned into countless, unending presents for us. Knowing Chelsea and spending time with her has been one of the best things we have ever done. She is a wonderful and warm human being whose smile lights up entire rooms and we are thankful to her for being our friend. These are some of the things that we have learned from Chelsea.
and finally...
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