Hydrocephalus Association Walk

Last year I discovered the Houston Hydrocephalus Association had an annual walk to help raise awareness and funding for Hydrocephalus.

Here's some facts about Hydrocephalus:

Hydrocephalus affects approximately 1 in every 500 births, making it as common as Down Syndrome and Juvenile Diabetes. 

• Approximately 1 million people have hydrocephalus in the US (it affects adults and children).
• There are believed to be 180 different causes.
• There is no cure and very little research. The NIH spends 60 cents per person with hydrocephalus per year compared to $300 per person per year with Juvenile Diabetes though the prevalence of each is the same.
• The standard treatment, a shunt, was developed in 1956 and has a 50% failure rate after just two years which is the reason so many have to have multiple brain surgeries just to stay alive.
• 60% of children with hydrocephalus are not independent as adults and require assistance.
• It costs the United States $1 billion per year in health care costs to treat hydrocephalus.
• Taken from Hydrocephalus Research Fund website

Hydrocephalus was part of Amber's diagnosis and while it wasn't the whole of her diagnosis and some of it didn't necessarily fit into just the hydrocephalus box, so to speak, I'm sure if she had lived we would've had to utilize the Houston Hydrocephalus Association's resources and support. That is why I want to participate in the walk and try to help raise money to aid in critical funding for this important issue for other families and kids who might be similar to Amber. And while I don't think this is exactly the right "fit" for Amber, because of her unique and rare diagnosis, I may never find the exact "group" that identifies with Amber. But rather than worrying too much about that, this is something tangible and positive I can do in honor of my sweet girl.

Last year's walk I only found out about it about a week before it was to happen and raised a little bit of money and was so happy to participate in the walk, especially because my friends and family were so supportive! And last year my friends and I decided  that for this year's walk we should have t-shirts and form a team, "Amber's Angels". So with that in mind I approached this year's walk slightly differently, I tried harder to raise awareness and money and had team t-shirts made. Which turned out pretty darn cute thanks to my very crafty friend Heidi and her small business (Heiditheserialhobbyist.blogspot.com). She does amazing things with her little machine and some vinyl. :)

I was so excited about the walk and was so excited to participate, it was at the zoo this year and I was looking forward to just enjoying being with my little family and my wonderful, supportive extended family and friends. So of course, I develop a major stomach bug or flu the night before and was up all night, throwing up and feeling completely miserable, I mean like death. I was trying to suck it up and just go but that wasn't happening.  I didn't eat for 2.5 or 3 days after, that's how bad I felt, clearly I was SICK, I would never willingly NOT eat for that length of time. And unfortunately a couple other people from Amber's Angels also developed the same bug and weren't able to make it to the walk either. I was so disappointed I couldn't make it but my cute friends sent me some pictures of "Amber's Angels" walking and having a good time along the way and that made me happy and so grateful for the good people in my life.