Today is November 1 and the first day of the Quilter’s Bee Giving Kickoff which will run through the month of November. SewCalGal has organized this fundraiser to raise awareness and support for four different charities. We are honored that she has selected HopeforHH.org as one of those charities. This fundraiser will be a raffle with tickets at $1.00 each for some wonderful prizes.
I’d like to tell you a little about HopeforHH.org, and the reason I am so involved with it. Our granddaughter, Ezri, was born with a very large and very rare brain tumor called a hypothalamic hamartoma. It was so rare that we had never even heard of it although both my husband and I were on the faculty of the medical school for more than 20 years. And not only had we not heard of it, neither had most of the doctors. And if they did know what it was, they had never had a patient with it. This tumor is located very deep in the brain and is attached to the hypothalamus. The hypothalamus is a control center for many things including emotions, thirst, hormone levels, temperature regulation, and other functions.
The primary symptoms of this tumor are gelastic (laughing) and dacrystic (crying) seizures and precocious puberty. These seizures are so subtle (and sometimes not so subtle) that parents often go years believing that their children are just behaving inappropriately. However, the precocious puberty cannot be mistaken and frequently is the reason children are first diagnosed. Left untreated, the seizures will progress to more serious complex and tonic clonic seizures and cognitive function becomes very impaired. Nothing is more devastating than to see a child born with normal intelligence and function decline in this way.
“HopeforHH.org is a volunteer based nonprofit organization founded by parents of children with hypothalamic hamartomas (HH). Our goal is to create a single, credible source for information about the diagnosis, treatment, and support of individuals with HH. Every family touched by this rare disorder has a unique and often heart-breaking story of how they attained a correct diagnosis. Obtaining a correct diagnosis can take months and even years and often involves incorrect diagnoses. Once a diagnosis is confirmed, many families struggle with choosing an appropriate course of treatment, if one is even available. Regardless of treatment, managing the daily lives of HH patients and dealing with the long term and frequently devastating effects of HH requires ongoing information and support.”
You can read about the many efforts of this organization which include hosting a website to centralize information and provide a community forum for families; and organizing and co-sponsoring meetings which included webinar facilities so that physicians and families from around the world can participate and discuss hypothalamic hamartoma. The organization has a Medical Advisory Board of physicians from around the world who meet and advise the volunteer Board as to ways to further the purpose of the organization.
All funds that are donated go to sponsor these activities as all personnel are volunteers. In the coming weeks, I will share with you some very inspiring stories of ways this organization and the physicians who support it have made a huge difference in the lives of affected children and their families.