While a lot of folks are focusing on the political slugfest between President Obama and Mitt Romney, the NFL season just around the corner, or back to school, people around the world are contending with Angelman Syndrome. The Internet and social media programs such as Facebook, have made the world a smaller place, and every girl or boy with Angelman Syndrome, along with their families deserve the best. It is with profound gratefulness, that two established 501 charities the Angelman Syndrome Foundation(www.angelman.org), and Foundation for Angelman Syndrome Therapeutics(www.cureangelman.org), are fighting so hard for research right now. They have empowered parents to gather information, generate awareness, connect with one another, and also show that they are a force to be reckoned with in advancing towards fair treatment for their child. These two organizations have done a fine job, in the endeavor of research, and we should all look up to what they are doing with Dr. Weeber at the University of Tampa, and Dr. Ben Philpot at the University of North Carolina.
Eileen Braun and Paula Evans started these organizations, and they are also both parents of children with Angelman Syndrome, a partial deletion of chromosome 15. Their efforts deserve a lot of credit, because they have taken the initative to stand up to Angelman Syndrome, and say "This deserves to be cured." While relatively rare, at one in 15,000 births or so, Angelman Syndrome has devastating effects to families, who are already struggling enough. A child with this condition, needs 24/7 medical attention, and the parents and "angels" as folks with this are called, truly do have halos. The deck of cards are often stacked against families who deal with Angelman Syndrome, yet their resolve and their willingness to defy staggering odds, often leads me to just sit back in sheer awe. While the ASF and FAST are two organizations that I am proud to support, and hope others will through volunteer efforts and donations, their focus is on research and education. That's the way it should be, but it does lead to frustration.
That's okay. The main focus should be research, as we are on the cutting edge, of a time where a chance for a cure is better than ever. Work at the chromosome level, and using FDA approved methods, the time is now. As for the frustration, it is parents from around the world, whom contend with regular ambulance trips due to seizures, and frequent trips to hospitals for short or extended periods of time. In some cases, and while not a comfortable subject, a child with Angelman Syndrome dies. It doesn't matter how they go, but it leaves a family faced with a journey that is too painful for words. There is a butterfly effect, and so many times angel families and others across the world, have stepped up in these terrible times. A parent sitting next to their child in ICU, if Norman Rockwell was still alive, he could paint that and it would be something that all would understand. Parents are in hospitals a lot, and have gotten used to helping their angel with doctors recover.
Eileen and Paula are both aware of this, and love families going through this. Their hearts are with them, but the ASF and FAST soldier on towards that cure. When a cure occurs, the constant hospitalizations, and ambulance trips with crying parents going "is this the time?", will no longer be an issue. There will be no parents picking out a casket for their cherished little one. Instead victory will have been achieved, and it is with prayers from so many, that this day comes sooner rather than later. Make no mistake, we are in a war for a cure. Its not up to the ASF and FAST exclusively of course, but parents who support these organizations and each other, along with researchers and universities doing breathtaking research. It has only been a few years since the DNA sequence has been discovered, but since then, it has led to astounding discoveries.
Yet there is a void, and I want to recognize Susan Salisbury Winfrey, as well as parents and people from around the world today. While the ASF and FAST have been fighting for a cure, which is the main goal, people like Susan, and I hope that she doesn't have that Oklahoma shotgun ready because she's a better shot than I am, should be commended for stepping up for Angel families across the world. Singlehandedly, she has been able to send gifts of comfort to those in hospitals. This is logistical nightmare. I do not know how she does it through Operation Angel Hug. Keeping up with so many children, whom regularly are going to hospitals, and out of the goodness out of her heart, I tip my heat. Facebook is helpful, as are other parents in making these connections when a child with Angelman is hospitalized for a long time, but its a daunting task. In many ways, there is no military "line of sight" available, due to no effective databases, and then there are issues such as Hippa(a good law), and other roadblocks that have to be contended with. These not only include where is the child, what's the address, does the family wish to be sent a gift as each person reacts differently, and so much more.
Operation Angel Quilt is the same. People from around the world, have shown so much love on this painful effort. None of us want to hear of a child dying. None of us want to go through such pain. Yet it happens. Even more so for children with Angelman Syndrome, than the general population. That cannot be denied, which is why a cure from Dr. Philpot, Weeber, or other researchers is needed. "When, not if," is the way it is, and even children with other conditions or none at all, die. Death is a part of life that all of us face, but it is so much more painful, when it involves a little one. Parents with kids whom have Angelman Syndrome, develop a bond that cannot be put into words. Their loss is Titanic in nature, and the Operation Angel Quilt, is a way that families can show parents going through the worst nightmare, that there is light at the end of the tunnel. Susan has done a fine job setting up this loving endeavor, and parents whom have experienced the loss of a child, feel so alone. Yet having a quilt if they desire, show up with other children with AS surrounding their little one in Heaven, in pictures is a cathartic moment for many. It is a quilt that can be looked upon with tears and smiles, or hugged in those moments of pain, when it cuts one's soul like a knife, and leads to heartbreak replaying itself over and over again.
Its an honor to support the ASF and FAST. Its likewise that way for Operation Angel Hug, and Operation Angel Quilt. In the Bible, and its not against people of other faiths, in Romans there is a section about people having different talents. So many people have brought up to the ASF, FAST, and other organizations, about having a database of angels, along with their parents information, language abilities, specialities, and it has yet to bear fruitition. This is no easy effort, as these groups just like others, are contending with what appears to be a small population of people, but there are thousands. While I do hope to see someone with the ability to generate a database, I am simply encouraged by Susan and those who have donated money and/or time with both Angel projects. They are sewing quilts, generating patches that show true love in a picture, and reaching out to one another. I will support all efforts that help families in hospitals or in those cases, where a family that is going through agony, needs a bit of a lift. Join Operation Angel Hug and Operation Angel Quilt. They are both fine ways of showing our support to one another, in good times, bad, and in the worst. These are how we can stay connected, and while we all wait for that day when a cure is established, until then may we be unified with our love towards one another.
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