The Global Hydranencephaly Foundation was founded by the amazing Alicia Harper in 2013 (Mother to <a href="http://www Extra resources.hydranencephalyfoundation.org/tribute.html”>Brayden Alexander Harper). Instead of letting her sons diagnosis and attached prognosis defeat her and her family, she faced it head on and chose to defy the common misconceptions associated with Hydranencephaly.
The Global Hydranencephaly Foundation is a non-profit family organization based in Seabeck, WA, in the United States of America. It is dedicated to helping families all over the world who are facing the unusual diagnosis of Hydranencephaly.
Alicia, the President, works tirelessly, fearlessly and voluntarily to reach her goal. There are also many other volunteers who help with running the Foundation, whether it be physical or technical. All of these amazing volunteers help selflessly with the same common goal pushing them forward……to be an advocate for children with Hydranencephaly.
How Does The GHF Help Families With Hydranencephaly Children?
Also known as GHF, The Global Hydranencephaly Foundation is structured in a way to provide life-long support to families with Hydranencephaly children. This support is given in several ways, including giving invaluable information for caring and raising such a child, help in obtaining the right medical equipment, medical assistance, advice when fighting for your child’s rights, and financial assistance or grants to qualified applicants, just to name a few.
Via the GHF website and Facebook pages, parents struggling to come to grips with their new diagnosis can find a network of friends willing to help and support them. This networking creates a powerful support system which can help through any crisis. Besides the public GHF Facebook page, there is also a closed group which is specifically for parents of Hydranencephaly children. This is a place where any question can be asked confidentially within the group. No question is considered to be too ‘silly’ and the only bad question is one that is not asked 🙂
The GHF and its team of volunteers work tirelessly to raise awareness about this condition and conquer ancient misconceptions about this diagnosis. The GHF motto is ‘Believe In The Impossible’ and they are gradually educating the medical institutions around the world that these children’s lives matter and that they deserve a chance to live with compassionate, quality care, without any form of discrimination.
How This Foundation Helped Me Personally
On a personal level, I can honestly say that without this amazing organization, my life with Natan Shai would be totally different. The support that I have received, even though I do not live in the U.S.A. is unbelievable. I interact with other parents on a daily basis and get the help and support that I need as well as trying to give as much help and support as I can to others. Being such a rare condition I don’t know any other parents of Hydranencephaly children in Israel, so this support system is such an asset to me.
With thanks to the GHF and the information I have learned from them, I have managed in a small way to educate some of the leading professors in this field in Israel and let them see a different side to children affected by Hydranencephaly that they hadn’t even thought about. Instead of being a ‘textbook’ subject that they learnt in medical school these doctors and specialists now see my little boy for the miracle he is!
So well done GHF! Keep up the amzingly good work! Thank You for everything!
With Much Love,
Hannah (Natan Shai’s Mom)