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Operation Angel Hug...helping bring a little joy to those with Angelman Syndrome who are in the hospital.
Rock shirts and OAH donations
Operation Angel Hug is a not-for-profit project that has been created by families of people with Angelman Syndrome, a genetic disorder that lists as but some of it's symptoms:
Seizures, non verbal, low gross motor control, low fine motor control, reflux, poor or non-existent bladder and bowel control, jerky movements, drooling, but a very happy demeanor.
These symptoms-and several others-may present themselves in greater or lesser fashion in Angelman Syndrome children, or "Angels", as they are commonly called. Sadly, the severity of these symptoms, most especially the seizures and reflux, involves lengthy hospital stays. In the worst case scenarios their young bodies simply cannot withstand the constant attacks within themselves, causing them to leave their families at a very young age.
To date, participation in Operation Angel hug includes families across North America, with our goal being that of a global project. The over riding purpose of Operation Angel Hug is to let parents who are currently in the hospital with their children know that, not only are they not alone, but they have their own "guardian angels" in the form of people who "Get it" - People who have been in that same situation, who have gone through what they are going through and want them to know there is a very large support network for them.
We let them know this by sending the family a "Box of hugs" - A gift box containing items that will bring a smile to the their "Angel" fighting their fight, as well as a small token of financial support to their parents, as a message that says "We know; We have been where you are".
Presently, the Box of Hugs contains the following:
1. T-shirt with the words "Angelman Syndrome"
2. Vibrating, chewable toy (most angels have oral fixations)
3. Therapy brush (for sensory stimulus and calming)
4. "Little Angels" book or DVD
5. A small financial contribution, consisting of an ATM card, Walmart card, or Gas card, depending on the families' needs.
While there are many groups, organizations and projects to help out with various aspects of life with Angelman Syndrome, the one single lack is that support for families who have to make all too frequent trips and stays in the hospital. While there are fantastic groups such as the Shriners or the Lion Clubs, the knowledge that this gift comes from a group that says "We KNOW, we GET it, we have BEEN there", is immeasurable in the comfort provided to the family.
The Angel Hugs project was initially funded by The Angel Quilt project, which, briefly, is a small group of parents who create quilts consisting of photos of hundreds of other Angelman Children, donated, along with $10, by other Angel parents. These quilts are given to the families who have suffered the greatest loss of all: That of their precious angel.
We have seperated the two projects and are seeking help on making Operation Angel Hug an international effort in letting parents know that they are not alone, there is help and there is hope.
To help with donations please click the link
Rock shirts and OAH donations
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