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Rys Gamma

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1 reviews

Review for Global Hydranencephaly Foundation, Seabeck, WA, USA

Rating: 5 stars  

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/

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

Role:  Client Served