GHF is a non profit whose goal is to spread awareness about Hydranencephaly and they do exactly that and more. My daughter had an in-utero diagnosis and was born with Hydranencephaly. The information that I found was grim at best and heartbreaking. I started finding other families that had children with this diagnosis and began to have hope but there was not a lot of information available. Global Hydranencephaly Foundation started to form shortly before my daughter passed away at the age of 2. I have seen this foundation grow and help so many families, old and new. They are working to change the way that medical professionals view Hydranencephaly so that new families have support, correct information and hope. The support from this amazing group of people never ends. Every Angel is constantly remembered and Angel Parents give families advice and talk about their experience. I was lucky enough to attend the first ever Global Hydranencephaly Foundation conference as an Angel Mom and it was like going to a family reunion. Hydranencephaly families are so incredibly knowledgeable and supportive of one another and always looking for new ways to help other families. I am proud to be a volunteer for this incredible foundation!
Thank GOD for this group! When my niece, Zoee, was diagnosed at two months old we weren’t given the medical terminology (hydranancephaly) for her diagnoses. Through googling we found the Global Hydranancephaly Foundation & right away connected with Ali Harper, founder & president, who gave us lots of helpful information but more importantly...HOPE! We’ve learned so much from our hydran family & are blessed to have their guidance & support.
Global Hydranencephaly Foundation has provided invaluable information and insight into my son’s diagnosis, and offered hope for his prognosis and quality of life. The foundation has also provided an unfaltering, steady network of support that has been a priceless resource throughout this journey.
GHF has been such a help and up lifting organization. Bringing hope, help for those with a loved one with Hydranencephaly. Education of hydranencephaly and raising awareness bring light to the subject with real kids surviving and thriving with with their condition. Different isnt less.
I personally have been so Blessed by GHF and So glad I found this resource.
We adopted our son, Logan, as a newborn with hydranencephaly. We had never heard of it before, but because Logan is now 14 years old, we have lots of experience. We love being able to learn from others as well as share our experiences with new parents who have recently heard of hydranencephaly for the first time. I can't begin to express how much it means to us to be able to stay in touch with other families who are dealing with the same problems and prognosis that we deal with every day. It's good to know that you're not alone!
My nephew, Jayden, was diagnosed with Hydranencephaly and Macroencephaly shortly after birth in Harare, Zimbabwe. For anyone, this is a difficult diagnosis to understand and accept and we were advised by his doctors to "just ignore him till he dies as he will be nothing more than an irritant in our lives"!!! This is a baby! A life, that we were blessed to be given to look after. We had little help with knowledge and no support until we came across the Global Hydranencephaly Foundation. They have reached across the ocean between us to support us in every way possible and given us hope and sent gifts for Jaydens special needs whenever possible. For example, Jayden will be asleep and suddenly jerk awake unless we physically held him close whenever he slept, and th Global Hydranencephaly Foundation suggested we get a weighted blanket for him... wait, a what? We had never heard of such an item and things like this are not available in Zimbabwe. After we requested a pattern to make one for Jayden, the GHF sent us a weighted blanket through the post, which has really helped. We have received a few other items from them as well. Please support this amazing non-profit so they can assist families WORLDWIDE just like us.
I want to thank Global Hydranencephaly Foundation for all of their dedicated and hard working people. They truly have been a God-sent for so many families struggling to find a positive side to this very grim diagnosis. My personal favorite is all the love and support GHF shows for it's "children" and families!
Thank you for all of your hard work, dedication and love that you show daily!
When our adopted daughter was 7 weeks old we got the diagnosis of Hydranencephaly! The Dr wrote her off his book immediately!!! All he said to us, while looking at our healthy 7 week old, was that she would not live to see 1 year of age! She would never show emotion, she would never recogize any one she is ever around!! She smiles so much now, laughs out loud, and KNOWS who we are!!! We were told by friends NOT to look up Hydranencephaly on line!! All the information was horrible, very grim, very much not a friendly tone at all!!
Then we found our FAMILY from the Global Hydranencephaly Foundation, who are always so supportive, who have so much information, who offer advice whenever anyone asks for advice. They share the good, the bad and there is always someone who has been through what you are going through!! This wonderful group is our family, and they go through the same things we do! We have a much better understanding ofhow to care for our special needs, hydran daughter! We learned alot from them about the type of equipment we would need for her, in the future! It is so wonderful to ask questions and know we have an answer coming soon!
To be totally honest, we never make a decision on anything concerning Serena, until we get advice or confirm it with our Hydran Family first!! They are awesome and have been our backbone for the last 3 1/2 years! :)
Global Hydranencephaly Foundation continues to give hope to thousands of family members of individuals with hydranencephaly everyday. GHF provides inspiration and countless resources for those who previously felt only desperation and despair. No longer do families need to feel alone and without answers. GHF has truly touched THOUSANDS. Words cannot express the gratitude GHF deserves. You truly are one of a kind and bring new meaning to words like “life”, “help”, and “support”. Thank you.
When I found global hydranencephaly foundation, my son was already a teenager, but the relief of finding other people in the same situation as us was great, the support you find, especially when he is ill, is great, and you can normally speak to someone who has been in the situation you are going through at the time, you can be totally open and frank, and know someone will reply without judging you. I am so thankful to everyone at GHF and really love hearing how their kids are keeping, and how they are coping, though it us very hard when a child gains their wings, especially when you have been through it yourself. The good thing about it being world wide is no matter what time day or night there is always someone their to help, comfort, advise when you are feeling overwhelmed, or just need to chat and boast about something your child has done, and everyone rejoices with you!! I dont know how I managed with my sons the years before I discovered GHF
I am honored to be able to Volunteer for the Founder to help her vision to help other reach out and spread the word about Hydranencephaly.
When our daughter, Charlie, was diagnosed with Hydranencephaly we were given no hope whatsoever. No hope for her to live, no hope for her to have any quality of life, no hope that she would be aware of her surroundings or even to know who we are as her parents. We were discouraged from seeking out information online as her doctors were afraid it would lead to "false hope". Eventually, I began searching and found GHF. It was one of the best decisions I have ever made. We were instantly welcomed and accepted as family. Any questions, fears, concerns or triumphs we had were answered with enthusiasm. Charlie is now four years old and remains a fighter, she has scared us so many times, but with the help of other families and their input I feel confident that any situation that may arise can be conquered with the knowledge and insight of our amazing Hydranencephaly family. The support is unlike any other, we are so blessed to have such an amazing group of people in our lives. Hydranencephaly is a devastating diagnosis, but with a foundation such as GHF, it is a miraculous experience that few people have the privelege of understanding. We love our "bee" families so wholeheartedly, that each one has become an integral part of our lives.
My angel Brayden was and still is the brightest star in my life. He taught me to always slow down and take one day at a time. My grandson is my superman and his mommy is his robin, Alicia will be there for all, to help and by the families.
I am proud to have a 14 year old daughter with Hydranencephaly and we love the support we get from other families and also being able to share what we have learned with other families with children with Hydranencephaly. We are so thankful for this foundation. They are a great resource to have and we wouldn't be this far without their support.
Global Hydranencephaly Foundation has given me the support I need to help me take better care of my child with hydranencephaly. Whether its seeking medical advice or venting about situations they are always there for me. It is nice to be able to return the favor when someone else is in need as well. We are like one big family looking out for each other and sharing the same journey. No matter what stage we are in in the hydranencephaly diagnosis I can always depend on Global Hydranencephaly Foundation to be there for our family.
I found this site shortly after having a second child diagnosed with hydranencephaly. Unfortunately our sweet daughter Bristol earned her wings when she was twelve days old. Her sister, Bailey, was fourteen and also had hydran. I had never met anyone that had a child similar to my daughter. I was amazed as I read what other mothers wrote about their children and how similar they were to Bailey. I finally felt like I had someone to relate to. I love how encouraging everyone is and how much they love and are blessed by these children. Unfortunately, our princess Bailey passed away three weeks before her fifteenth birthday. It has only been four months and I am just barely surviving without her being here. I do not know what I would do without the love and encouragement from GHF. It puts a smile on my face to see Bristol and Bailey's hydran brother and sisters loving life and smiling. I especially love the giggles.
My Grandson was given the diagnosis of hydranencephaly when my daughter was 32 weeks pregnant. She was told to terminate the pregnancy as the baby would not survive the birth and if by any chance he did, his life would be very short. The doctors stated that my Grandson would be unable to recognise us and would be unable to show any emotion. Luckily I had found a group of people, who we now consider to be part of our extended family. The information and support that the Global Hydranencephaly Foundation provided, enabled us to believe that my Grandson would survive, would in time recognise us and would be able to show emotion. He has done all of these things and is now 3 years 8 months old.
My niece, Burkleigh, was diagnosed with Hydranencephaly while she was still in her mommy's stomach. I sought out any and all information I could get. My mother actually stumbled upon the Global Hydranencephaly Foundation web page and invited me to join the Facebook page. It's truly an amzing thing to know you're not alone while dealing with a disease like this that affects only 1 in 10,000 babies. This foundation is absolutely amazing and I'm so blessed to be a part of it.
I am so proud to be a volunteer for Global Hydranencephaly Foundation! This foundation is near and dear to my heart as the adoptive mother of two girls with hydranencephaly. When my oldest daughter was born 12 years ago, there was very little accurate information on the internet regarding this condition and only a small support group of mother's with children who had hydranencephaly. As this new non-profit was formed, and a new facebook support group was formed, I have watched it grow and reach out to numerous families across the globe. Growing from 50 families to over 315 families in two years is a testament to the usefulness, accuracy and educational efforts of the GHF. And the support group affiliated with the foundation is the largest, best and most supportive that I have ever had the pleasure of being a member of! Thank you GHF and families for helping me daily in my journey with my two hydranencephaly miracle girls!
After we learned our little baby boy had hydranencephaly our hearts broke. Not knowing anything about the condition we started searching the internet for information. Our hope faded with every different site we found. When we had almost given up, we finally found a page that put a little hope back into our hearts. Finding the foundation has put so much hope back into our hearts, and has help our boy thrive and LIVE with hydranencephaly. Having a foundation with such an active Board of Directors is truly a gift for hydran families. In a time we would have felt lost and alone, we have been able to connect with so many people walking such a similar journey as ours. The foundation has supported us in giving our son the quality of life he deserves. We cannot be more thankful for that.
Global hydrancephaly is a wonderful organization that supports and educates other familes and the public on this rare disease. These children are true miracles.
It was a few weeks after Christmas 20011 that my Grandson Ry was diagnosed with Hydranencephaly. My Daughter and Son in-law were told after Ry was airlifted to Denver Children's Hospital that they felt they needed to run a brain scan on Ry. The results were heart breaking. We were told that Rys condition usually is fetal within the first year and there was NO hope. We sat for days and looked down at this precise little boy and said were amazed at what they told us. He would be a vegetable for the rest of his life. That life would not be long. He would never walk talk think or react to anything. We kept going back to the videos and wondering how they could think this. Our little Ry at one month. (yes one month old) rolled over by himself. He loved to watch tv, he loved to take baths, he would quite when he heard his music box or was put in his swing. His daddy would walk in the room and Ry would hear his voice and turn his head and look frantically for him. We just knew the Dr's had to be wrong. I was convinced that they had diagnosed Ry wrong. He loved his mommy and daddy more then anything. The minute they put Ry in his mommy's arms his heart rate would always level out, his breathing would calm and he would be content and fall asleep. I have tons and tons of videos of such things that they said he would never do. But he did do them and how was this? I just didn't understand. I decieded to do some research regarding the condition. That is when I stumbled upon our hero's, and yes there are lots of them. They are the babies and teens and yes even one as old as 31 years old Hydran kids. They are the moms the dads the uncles the Aunts the granmas and the grandpas of these kids. They were there for all our questions all are needs and all the advise we needed when we didn't have anywhere to turn. Our dear Ry earned his wings this February and to this day the group is still a part of our family. I can not tell you how much joy and relief I feel each time they find a new mom or and Dad of hydran baby that is new to the group. First thing that comes to my mind. THANK you God for giving them what we needed and got us through the hardest times of our life's. I do not think I express enough need for this Group. This is one of the Groups were the Dr said there is no help. Were they said we are going to get him ready to take him for him to die. NO this group showed us how to accept Ry for what he was and enjoy (as my son-in law josh says) breath by breath with our dear Ry. They are a group that I know saved my daughter and my son-in laws sanity and heart and gave us the gift to enjoy Ry each and every day he was with us. When we were told there was no one to turn to and all we should do is sit and wait for him to Die. This group gave us the love and support that every single parent and child deserves. Thank you Global Hydranencephaly Foundation you will always be a part of our family. God Bless you all. Please stop by the web site and read and learn about our babies and parents. http://www.hydranencephalyfoundation.org/