We are Family!
Posted by amandagarzon on December 6, 2012 · 2 Comments
Tracy (left) with her family
My name is Tracy, and I was born with hydrocephalus. My condition went undetected for 23 years, until one morning I woke up and drove to work and was not able to get out of my car. I remember sitting in the parking lot, scared out of my mind, knowing that something was very wrong. I was diagnosed with hydrocephalus, but told it wasn’t time to have surgery. Over the next 4 years I underwent a series of testing and scans to monitor the condition until it became apparent surgery was necessary. I was treated with an endoscopic third ventriculostomy (ETV) and introduced to the wonderful work of the Hydrocephalus Association.
I quickly realized the Hydrocephalus Association is an organization I want to support wholeheartedly. I have both received and given so much support and education through the amazing network provided by the HA. The incredible amount of information shared and having the opportunity to connect with others who live and fight with the same condition as I do makes me want to make a difference.
I GIVE because HA has been there for me, and I want to be there for others in the same situation, just like family.
Won’t you join me today and give a holiday gift to support HA’s efforts? A donation of any amount will be used to support our community family and fight this condition together. To donate, please click here: MY HOLIDAY GIFT
Thank you in advance for your kindness and warm wishes for a joyful holiday!
Sincerely,
Tracy Taback
HA Support Group Leader
P.S. I will be celebrating my 33rd birthday soon and feel so very hopeful about the future. As a Support Group leader, I see the impact of HA’s work every day. We are making a difference!
Beautifully written, Tracy. I have many of the same sentiments….the Hydrocephalus Association was there shortly after our daughter was diagnosed with this condition at age 13. They have continuously supported our family when we had questions, and again when I also made the decision to become a support group leader. I have begun to see increased awareness even in the last number of years…and I am so hopeful that the goals for better treatment and more research are being met because of you and many others who work towards those goals.
I also want to comment that I love your family portrait. Happy Holidays to all of you!!
Our son was diagnosed with hydrocephalus 3 years ago. He was also 13 at that point. He got an ETV on january 20th 2010. He is fine today and actually still seems to get better and feel better everyday. He told me after the surgery that he was grateful that it was a “real desease” at the base of his condition. He was actually scared that he was loosing his mind. He must already have had hydrocephalus for about 6 years before he was diagnosed (as we were told after the MRI). One year before he was diagnosed he went through all kinds of tests as he didn’t have the typical symptoms: vomiting. He just started to shake more and more and just before he got diagnosed his whole body trembled and he had a hard time to even drink or eat soup without spilling everything.
Of course, as you all know, these are horrible news. I contacted a lady from the hydrocephalus association and she was very kind and encouraging. The information provided by the association also helped me to explain the condition to his teachers, to get an intervention plan (having more time for the exams in his case) and to comfort us as parents about the condition. I would therefore also like to thank the association and everybody who shares their history on this website. What I find mind-boggling however, are all the stories, ours included, where it took such a long time to get a diagnosis. Mind you, in the years before our son started trembling, there were other symptoms that we and the teachers found weird. However, more often than not, they were associated with stress at school. I think that hydrocephalus is still a very unknown condition – at least when it does not concern newborns.
Again, thanks again for all your work!
Take care everybody and have a great year 2013,
Sonja