It’s Never Too Late
Posted by amandagarzon on December 27, 2012 · 5 Comments
I’m writing in memory of my daughter Ellen who passed away on July 17, 2006.
She was my youngest daughter and had two brain surgeries, first an ETV followed by a shunt placement. She blossomed when the pressure was relieved in her head and was the love of my life. She passed ten days prior to her first birthday from other complications. I miss her terribly and would do anything to bring her back.
I’ve watched HA grow over the years, and I am encouraged to learn of the expanded focus to find a cure and discover better treatment options. I am committed to sharing Ellen’s story to help raise awareness of the great support services and work of the Hydrocephalus Association as well as to help raise funds to find better treatments for everyone living with hydrocephalus. Truly, no parent should ever have to bury their child. Through it all, I still feel connected to our community and grateful to HA.
I GIVE to memorialize my beloved angel and to give other children the bright future they deserve!
If you have not yet made a year-end gift to HA, I hope you will do so now. It is not too late. Together we will end hydrocephalus. To donate, please click here: MY HOLIDAY GIFT
To a brighter future and New Year filled with hope,
Andrea
HA Member
I was born with hydrocephalus. I’ve had 53 brain surgeries and I’m 25. I have a vp shunt.
Wow, Ellen. You’re story really moved me emotionally. I feel for you. I am sure your precious little Ellen was the joy of your life. I am equally sure you will see her under better conditions one day in the
future. Thank you for honoring the memory of Ellen by furthering the cause and trying to make Hydrocephalus more widely known.
Angela
Hydro aware since April of 2012
Age 45
living unshunted.
I was born with hydrocephalus and had a shunt put in when I was a month old. I do from time to have seizures. I’m 37 now and have had no complications . I just had a friend that had twins before Christmas and the little girl was just diagnosed with it as well . I only hope the things will turn out ok for them. This is one thing that I hope some day we’ll find a cure for.
Alma, our daughter was born at 32 weeks of embazo with the diagnosis of hydranencephaly (had no brain, most of it was occupied by the liquid).
They put the valve (shunt) on the 24th of January and we were sent home on January 30 and she was stable.
Alma doctors said would have to feed as not would suction probe, and would not esucharía. They talked about that would not survive the year.
Today Alma has 1 year, laughs, tries to say mom, dad, water. It feeds well, chew, swallow, making cookies with their hands and fed.
As parents we all the time information, references, cases, new developments, help, we can be useful to Alma proceed.
We found your page and really liked it. If we can help in any way we will be very grateful.
Alma, Manuel and Cynthia from Buenos Aires Argentina
My youngest son was diagnosed hydrocephalus when he was 15 days old. After four months he undergo V-shunting operations. He was 5 years old now.