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Katie47

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1 reviews

Review for Global Hydranencephaly Foundation, Los Alamos, NM, USA

Rating: 5 stars  

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.

If I had to make changes to this organization, I would...

If I had the funds, I would BUY the first postion in google searches to be the GHF page when you searched "hydranencephaly". I am so thankful it is there, and hope that it doesn't get overlooked by hydran families like it almost got overlooked by ours!

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

How did you find this group?

Web searches after our son's Dx.

What, if any, change in your life has this group encouraged?

It put hope into a seemingly hopeless situation. It is helping to provide the quality of life my son deserves through community support!

Role:  Client Served