ohh and my email is aewrrb832@yahoo.com if anyone can help.

Hi!, my stepson is 22 now and he was born w/ hydro. Now it seems like we are going through a never ending battle of headaches vomitting dizziness and siezures, doctors keep givin him meds , that only make things worse. I hate seeing him in so much pain and not sure what else we can do......any suggestions?

I would like to share with you that you are not alone. My son Ian is 4yrs old. Ian was born full term and at birth he had bruising all over his body. They determined that he had low platelet levels that could cause internal bleeding. After MRI's and CAT Scans...they diagonsed Ian with a Grade 4 IVH w/hydrocephalous. Ian's shunt was placed @ the age of 2 months. The neurosurgeon was very up front and told me that Ian would NEVER walk, talk, crawl, and be independent. I had so much anger built up because he was too innocent to be going through what he was going through. I just wanted to take all his pain away. I hated his surgeon for even telling me what she told me and hate is a strong word. All that hatred though built up my strength to fight for my son and not give up hope. I was determined to prove that surgeon wrong. As of today, Ian has exceeded his goal in social (talking), he does everything but walk independently. He does however, walk with a walker. My son is the happiest baby in the world and every time I see his smile it reminds me of each and every day that I fought for him, prayed, and had faith. You can never give up hope. God is good but power of family and love is even better. All my hatred for the surgeon has turned into thankfulness because if it wasn't for her my son and I wouldn't of had the strength to go on. I think they just give you the worst case scenario even though they know you DO NOT want to hear it. Ian like I said, is the happiest kid on earth and his smile just WOWs everyone. After an experience like this, it teaches you not to take life for granted or even the little things in life. I'm glad your daughter has done the same and proved those doctors wrong. God bless..

Hi! My name is Bob.I had my first brain surgery at age 6 back in 1977 for a tumor the size of a grapefruit.I then acquired Hydro. at the same age and was shunted followed by 3 revisions within 2 weeks.My last revision was 12/29/81.I was 10. My shunt is currently working at only 80% so Im sure a revision is on the horizon.God bless you.

Hi Madison, I am older than you! I am 69 years old and was born with Hydrocephlus that Doctors said was arrested. I used to have spells where I would get dizzy and sick and vomit and also Siezures. So I have epilepsy which is an part of hydrocephalus. I have had 3 shunt surgeries, the last one was in 2009 here in AZ. So far everything is holding ok. I also am deaf with a cochlear implant. Didn't walk until I was 2 years old and my speech was delayed. Had to wear braces on my legs until I was 4 I believe. So this Hydrocephalus can follow one even into adulthood. You are a brave little girl and you have a brave mama and Dad too. Take care of yourself and thru the grace of God you have arrived!! Sincerely, Barbara Lasell Rose Combs Maricopa, AZ i

I was diagnosed with hydro @ the age of 12. I was very sick as a baby. If my parents had taken me home I would have died. I was shunted at age 33 ( I will be 40 on Halloween). I've had 18 shunt revisions since the first one was put in, the last one being Feb. 28 of this year.

Aww so cute

My daughter has Hydrocephalus and I have SO many questions! I am having a hard time with my N.S. and heard through the grape vine you might be able to help! Please email me so I can tell you more about my story! THANKS, Heather HMBannister@Yahoo.com

Hi, thank you for sharing your story. Your daughter is amazing. Our three year old daughter had ECMO which led to a grade 4 bleed and resulted in hydrocephlus and a shunt at birth. Although she has severe brain damage she is doing great she is walking, running, jumping, signing and starting to speak and she is even doing ballet. Your website gives hope to families like ours thanks.

I work with Jay at Terex. Your story is amazing and your daughter is so beautiful! I thank Jay for sharing this website with me. I have a one year old and I do not know if I could be as strong as you were. You two are amazing parents!

My email is jmucci76@aol.com

First, I really want to know about Sabrina. Did you get what you needed to save her? I went to the link but didn't see anywhere to donate... As a family, we too are all to familiar with hydrocephalus. Our daughter was born 6 weeks premature and the hydrocephalus was missed, even though she had all the signs! Two weeks later when we took her back to the hospital because the acid reflux, which is what we were told she had, was so bad, she was finally diagnosed. She is on shunt number 5! It doesn't get any easier, and I have friends who were told that it is just like doing maintainance on a car, it is not, this is our child! This time, after surgery, she seems a little different... I am very worried. I have actually taken her back to the doctor and they told me that her body is trying to adjust to the new pressure in her head. Do you ever stop worrying? I want to thank you for sharing your family's story... I really appreciate because even though I have made some great friends in the same situation, it really does help knowing we are not alone...

You are an amazing mom and your story is inspiring. Thank you for sharing it. Your daughter is absolutely beautiful and lucky to have such a wonderful family. Eileen

Your little girl is so beautiful! I am so glad you didn't listen to the doctors. They don't know everything! I was born in 1991 and had hydrocephalus. The doctors told my parents I would be blind and brain dead. One neurosurgeon thought my parents were crazy for wanting to put in a shunt. Well I have graduated from high school and am going to college to be a nurse. The doctors are just amazed! I hope your little girl is doing great and wish you guys the best of luck.

Hi my name is Lisa I was born 9half wks prem with hydrocephalus I am now going to b 36 in June.Have had 7revisions 1st being at 4mnths &the last to date at 17yrs with a compete revision,I remember the last two@10half&17it was pretty painful and tookabout 6mnths to feel normal!your little miss Madison is cute! Hope she is well having lots of fun enjoy her!as u can c hydro babies can live a long time:-)xoxo(Lisa-Siena on share story website)xoxo

What a beautiful little angel and an amazing story. Makes us stop and think that miracles do happen and there is power in prayer. Always trust that mother's intuition...God bless your family!

My email is cathy.ridley@att.net

Wow. That's all I can say. I watched the video and read your story and cried the entire time. It was so.. full of hope. My daughter had a grade 3 bleed, was born at 28 weeks with bacterial meningitis. The bleed caused the hydrocephalus. She now has a shunt. You give me so.. much hope. You are a wonderful family. I'd love to correspond with you guys for we are just now a week out of the hospital and me and my husband are divorcing. Its been really tough but your story has inspired me. God is good and my Fallyn is a miracle too. Thanks for sharing. I live in Texas but would love to email correspondence with you guys. I could use a friend a long this journey.

Hi Madison and Kelly i just showed my friend your website and she loved the pics. Her name is liz and i figured she would be interested because my brother nicholas has hydrocephalus and i know she cares about him and so do my other friends and now i am going to show her little charlie rocks good luck Kelly, Christi, Madison, Jay, and Zack

My friend showed me this website and she is just so adorable!!!

Hi, My name is Jessica and my daughter is 2 years old. We found out she had arnold chiari type one malformation which is where the hole in your skull that connects with your spine is too small and fluid cannot drain. In result she had hydracephalus and underwent surgery 4 months ago. It is so nice to see that there are other people out there who are going through the same thing. It is nice to know that she will grow up and lead a wonderful life. Our daughter was developing at a slow rate, we had taken her to so many doctors from gastros to neurologist and they all told us she was fine. Her syndrome was diagnosed by an opthamologist and within 5 days we were at Primary Childrens Hospital having surgery. I am so thankful for our two amazing Drs. Dr. Scott Larson (opthamologist) and Dr. Riva-Cambrine (neurosurgeon). Your daughter is beautiful and I hope all continues to go well for you and your family. Thank you for having this site, it is such a great and wonderful support.

I am soo scare, my baby boy had his 9 months check up and the doctor told me that his head had grown too much from his last check up at 6 months. he is now at the 95th percentile and he was ay 75th at 6 months. Doctor want to see him again in 1 month and depending on that he will have to get a cat scan to see what is wrong (if something is wrong). I have been reading a lot about possible causes and I am in total panic. He is a healthy active boy, already crawling everywhere, talking, standing up, and adorable, I can't bear the thought of something changing that. Please some one tell me that everything will be ok! please pray for my boy, pray that next appointment he is ok and that his head didn't grow any anymore. Thank you!!!

Hi, i am 27 yr old women who had her first surgery in 1984 and my most recent surgery in 1999. I know and understand your story it has been 9 yrs since my last surgery. And I also had Meningitis at 18 months old. Now i have graduated from both Jr high , high school, and college. I also now have a 4yr old son,

Madison's story is amazing. I am a good friend of Zack's in NTW, and he is always talking about her and how much he loves her. But, my brother and I have had something that we can both relate to Madison about. When I was born, I was born late as most first-borns are, and I was supposed to be dead by the time I was 3. I am not sure what my condition was, but I was not supposed to be able to walk, talk, I would be forever blind, nothing. I started walking at 7 months, and was talking before that. I am now a healthy 15 years old, and talking, seeing, walking, everything the doctors said I would never be able to do. My brother on the other hand was born premature when I was 13. He was not supposed to live, since he was so underweight and premature. I believe his head was larger than normal, as well. He wasn't supposed to live for his 1st month. He was in the NICU for 3 months, then on a heart monitor for 3 or more after. He started walking when he a little under a year old. He still cant talk, but he has speech problems. He also has sensory issues, but we are working with him the best we can. Currently, he's 2 years old plus a few months behind him. He is extremely smart, though; for he does puzzles that are for 4-5 year olds and that he's not even supposed to be able to do. He has figured out how to use many appliances in the house, and he's the smartest 2 year old that I have ever known. He loves playing peek-a-boo and sword fighting in the aisles at Wal-Mart with the foam swords. I always let him win, too. I love him to death, no matter what anyone says. But, that's a summary of our story. Maybe it can help, even if it doesn't relate completely to Madisonâ??s story.

my name is cinthia im 24years i have a 2 year old gaugther her name is Kayla she was born with congenital hydrocephalus i was 8 months pregnate when they told us the also told us to have a abortion they said that she would not make it onese she was born. im so happy that Madison is doing so great. i would like to send u some pictures of my littel angel canyou please get back at me my e-mail is cynthi_8583@hotmail.com