Progress-index.com reports on ten-year-old Casey Wray of Colonial Heights, VA, who was given an all expense paid trip to to New Jersey to see WWE’s WrestleMania by the Make-A-Wish Foundation. Casey has hydrocephalus and, on the trip with his family, met other families from all over the world, including another little boy from Kansas with hydrocephalus.
New Vision, a Ugandan newspaper, reports that health estimates show over 2,500 new cases of hydrocephalus are reported each year. Since treatment can be cost prohibitive, Johnson Derek, the Executive Director for CURE hospital in Mbale, states that they have developed a way to assess families ability to pay and are providing children much needed medical help.
Researches from the Texas A&M Institute of Biosciences and Technology have found a connection between hydrocephalus and a genetic defect, a finding that may eventually lead to treatments for this form of hydrocephalus.
I smile because you are my sibling.
I laugh because there is nothing you can do about it.
In 2010, the Hydrocephalus Association established a new program to not only empower and lend support and guidance to young adults living with the challenges of hydrocephalus, but to their loved ones as well. In honor of National Siblings Day, we want to highlight a special group of loved ones in our lives – brothers and sisters, both older and younger, of individuals living with hydrocephalus. The relationship between siblings is complex and sometimes even…shall we say… strained, but there is a powerful, unbreakable bond that endures through the best and hardest of times. Two of our Teens Take Charge (TTC) Advisory Council Members, Harrison Silver and Alexis Rocciola, share a special message to their siblings.
Stand By Me: A Message from Harrison Silver
Hi! My name is Harrison Silver. I am 15 years old and have two younger brothers who are turning 14 and 10 next month. I am one of the fortunate ones. I have never had any operations after my shunt was first put in at the age of 3 months. I also do not have any outward appearances of hydrocephalus. I am a typical teenager who likes to do things on my own. My brothers, like any other brothers, sometimes bother me but give me space, which allows me to figure things out on my own. They look up to me and respect me, which makes me feel responsible and loved.
Three years ago, I raised money for hydrocephalus by selling refreshments at my brothers’ little league baseball games. My middle brother, Jack, liked to bake cookies and brownies, which we sold at the games. He also sold these to his friends at school to raise money. Both my brothers helped me set up the table and count the money at the end of the day. Two years ago, I raised money by asking people to sponsor me in participating in a team triathlon. Jack swam, I biked, and my grandfather ran. My dad did all three parts with us. He’s like a super human! My youngest brother, Justin, my grandmother, and my mom, cheered us on. Bottom line is that my brothers are always at my side whenever I need help with something.
Together, my brothers and I like playing board games and watching TV. We also like traveling, going to the beach, and experiencing new things. And of course watching, playing, and obsessing over sports. From the Yankees, to the Giants, the Rangers, the Knicks, and the Buckeyes, my brothers and I are always bugging our parents wherever we are to go to a place where we can watch the games. And we usually get what we want. Thanks Mom and Dad! We love you!
Since hydrocephalus only affects me because of the number of times I must visit the doctor, I am able to help my brothers whenever THEY need to go to the doctor. When my brothers are not feeling well or have to spend time going to doctors, I comfort them by reminding them of how often I used to go. I tell them that everything will be okay just like it is with me.
I believe incorporating siblings in Teens Take Charge (TTC) is very important because they can learn first hand what their brother or sister is going through. I openly share my story with my brothers, but others may not. Because they are being involved, these siblings can help more by learning from the other members of TTC. Also, they give a different perspective that people who have hydrocephalus cannot.
So, to all siblings out there, I am definitely not the only one who gratefully appreciates all that you do for us. Keep up the great work! We really appreciate that you guys are getting involved in a charity that does not personally have anything to do with you. To MY siblings, I do not often say it, but I love you guys. You accept me for who I am and do not judge me. I am lucky to have such great brothers. Thank you Jack and Justin for always supporting and loving me!
Siblings are the people we practice on, the people who teach us about fairness and cooperation and kindness and caring – quite often the hard way.
Sisterly Love: A Message from Lexi Rocciola
I have hydrocephalus and my sister, Chiara, does not. When I had my last shunt surgery, my sister surprised me with a gift she picked out herself. It was a t-shirt with angel wings. She said it was because an angel was watching over me. It made me feel a lot better.
My favorite moment with my sister was and has been watching her grow into a beautiful young lady! She has achieved so much and I admire her a lot!
I think it’s important that all of us who have hydrocephalus do not compare ourselves to our siblings. We all are different and not the same. We all have our own unique story to live. Sometimes the families tend to focus on the child with hydrocephalus and we need to remember that the siblings, who are left at home or with other family members, have needs as well.
I would like to send a special message to my sister to tell her how much she means to me and how much I appreciate her. You are becoming an amazing young lady and I am always proud of you! Thank you for being there for me. You are the best sister in the world.
My greatest memories are those shared with my siblings, for they are not simply thoughts of our shared past, but rather stories about our own beginnings.
Aesculap introduces a new gravitational shunt valve that allows for different pressure settings for the lying and the upright positions. The Miethke proSA valve is implanted in combination with fixed or adjustable valves.
Click here to read the Aesculap Miethke proSA press release.
The International Federation for Spina Bifida and Hydrocephalus (IF) hosts it’s 24th international conference “Unite and Share” on June 28 and 29, 2013, in Izmir, Turkey. The conference will bring together healthcare professionals and individuals with spina bifida and hydrocephalus to share the latest knowledge and exchange their experiences.
From fundraisers, awareness and advocacy events to sharing personal stories and experiences on our website and social media networks, teens and young adults across the country are banning together to create a network of support for each other. Madeleine Darowiche shares how Teens Take Charge has benefited her life.
By Madeleine Darowiche
Teens Take Charge (TTC) has helped me in many ways. I first learned about the program a few years back when I also discovered that the Hydrocephalus Association has a WALK in my area. I was very excited to have discovered the program. I read the blog posts and I realized that most of these teens were going through many of the same obstacles that I encounter. I looked forward to someday getting more involved with the wonderful program. Unfortunately, I was unsure of how to interact until this past summer when I went to the HA conference. It was there that I was able to speak with others on ways to be proactive with Teens Take Charge. I now am much more involved, and it has greatly benefited me.
I have gotten more confidence because I am not alone. I am finally able to communicate with others who understand the small but sometimes frustrating challenges that life can bring. I feel very lucky to have discovered the program, and I hope that someday other young adults who feel alone will find out about it. Teens Take Charge is such a great program and hopefully it will benefit others the way it has benefited me.
Are you between the ages of 12 – 25 living with hydrocephalus, a close friend or the sibling or son or daughter of someone living with hydrocephalus? Become a member of Teens Take Charge! Here’s how you can get involved:
- Join us on FACEBOOK and TWITTER and help create a community of teens making changes happen.
- Meet the TTC Advisory Council: Ashley Snyder, Nicole Padron, Elijah Lawrence, Megan Rivkin, Chiara Rocciola, Wyatt Barris, Harrison Silver, Madison Pardi and Lexi Rocciola. You can chat with them via Facebook posts or messages.
- Sign up to receive updates from TTC. Click here to receive “Teens Take Charge” updates and alerts and be sure to specify ‘Teens Take Charge’ as your alert type.
- Show your support for teens and young adults affected by hydrocephalus. Purchase a Teens Take Charge t-shirt.
- Submit your story! We are inviting young adults to guest blog on the Hydrocephalus Association’s website. If you are interested please contact Jennifer@hydroassoc.org.
- Don’t forget to download valuable resources that can provide important information for you and your loved ones. Visit our Publications page on our website or search through our Hydrocephalus Resource Library.
This year we commemorate our 30 year anniversary. Over the last 30 years, the Hydrocephalus Association has significantly impacted the health care and scientific communities as well as the lives of individuals affected by hydrocephalus. Reaching a significant milestone such as a major anniversary, allows us as a community to recognize and celebrate our achievements and successes. It allows us to look back and see the impact we have made. We hope you enjoy learning about the rich history of our Association, Read more
The Hydrocephalus Association is excited to announce the formation of our 2013 Scientific and Medical Review Committee (SMRC) for our current grant opportunity in partnership with the Rudi Schulte Research Institute. We are honored to have distinguished and experienced hydrocephalus researchers on the Committee, which will review and rank the grant applications. Read more
In 1983, a small group of parents whose children had hydrocephalus came together seeking community. The children were all patients of Dr. Michael Edwards at the University of California, San Francisco Medical Center. Dr. Edwards and Lori Howell, his neurosurgical nurse, graciously hosted a few small, informal gatherings after Emily and Russell Fudge expressed their feelings of isolation and frustration when their son, Gerard, had his second shunt revision. Read more