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Help the Children

Climbing for Spina Bifida
by John Page

Climbing the highest peaks in New Hampshire, Vermont and Maine may seem no big deal to a lot of climbers, in fact a bit of a joke. After all they aren’t the Colorado 14’ers or high peaks in Alaska but let me tell you my story so you can see how climbing the highest in New England is a very a big deal.

My name is John and I have a Daughter who will be 6 years old soon. Well as many of you know all kids are special but some such as my Daughter are pure delight. You see my Daughter has Spina Bifida and for those of you who don’t know what that is let me explain. Spina Bifida is a Neural Tube Defect which happens during the first few weeks of pregnancy. So in a term everybody can understand, the first thing that grows in a baby is the spine. Sometimes (1-2 in 2000 births) the spine doesn’t form correctly and this may happen anywhere along the spine. As the baby grows the nerves in the spine do not grow together and there may be a bubble that protrudes outside when the baby is born. The bubble is a bundle of nerves that are basically bunched together.

There are several types of Spina Bifida and some people have Spina Bifida and never even know it. This is called Spina Bifida Occulta which generally causes no problems.

Sometimes when a baby is born there is just an opening along the spine which was the case with my Daughter. Generally this type of Spina Bifida that my Daughter has causes a large array of problems. That requires intensive care at home or in the Hospital. Some of the things my Daughter suffers with are Hydrocephalus which is excess Cerebral Spinal Fluid in the brain. This is a common problem in kids with Spina Bifida and it requires a shunt. A shunt is basically a pressure valve that is placed in the head to drain the excess fluid away through a tube that is connected to the shunt then placed in the abdominal cavity. If a shunt is not placed or a malfunction if the shunt occurs the pressure can build and cause death if not relieved.

There are many other problems that a child with Spina Bifida may have including bowel and bladder control problems, scoliosis (curving of the spine) and loss of mobility. Now the higher the opening or bubble the more function that is lost. These are just a few of the problems that may occur. To put in bluntly compare the possible side effects of just about any medication and then think about Spina Bifida. The side effects of the medication may or may not happen which is the same with Spina Bifida.

Now before we move on as to why climbing the highest in New England is a very big deal let me tell you how Spina Bifida can be prevented. There is no cure for Spina Bifida but you can lower your risk of having a baby born with it. All women of between ages 15-44 should take 400mcg of folic acid as a regular part of their diet If this were done we could reduce Spina Bifida births up to 70%.

So back to my daughter and why she is so special to me and all those who know her. Erin has had a very rough life in her short time on Earth having had over 30 Surgeries. From replacing shunts to having a Tracheotomy and from bladder and bowel problems to mobility problems.

So let me tell you now what climbing the highest peaks in New England and our mission is. What it means to myself and so many others. One day while driving home from the Hospital after visiting my Daughter I was wondering what I could do to help other afflicted with Spina Bifida and being an avid lover of the mountains I began to think about climbing. After deciding that climbing would be what I could do I began to think about what to climb. Let me tell you this took quite along time because I felt it had to be something special to me and would be to others as well. And Everest or the seven summits didn’t enter my mind due to the cost of getting there, actual climbing cost etc. As my thought turned to New England I knew what I would do. I would climb the highest 67 mountains in New Hampshire, Vermont and Maine to raise awareness and funds for the Spina Bifida Association of America/Massachusetts Chapter www.msbaweb.org.

This is the chapter the serves our area but where would the money go? I put a lot of thought into this and decided that I wanted most of the money to go to the people with Spina Bifida. You see each year through this association each person gets an allotted amount of money to use for things they have need for that insurance may not cover. I also wanted to benefit the organization as well to help cover operating costs. But one of the most important things I wanted to do is raise awareness of Spina Bifida and let as many people know as I could about prevention, which is very important to me as I would hate to see one more baby with Spina Bifida that could possibly have been prevented.

The plan was set in motion in May but was thought of in November and as I said it took a long time to decide what to climb and who to benefit. It wasn’t about being the first or being in a race to climb as fast as I could. It was about a 12 – 18 month expedition to help others and sort of cleanse myself of all the stress that goes along with having a child with S.B. It was about reaching out to help others and give people hope in something that I deeply believed in.

I’m just Erin’s Daddy and I’m not a professional mountaineer and I wasn’t climbing Everest so who would be willing to sponsor a guy like me ? I stated a My Space account (myspace.com/climbingforspinabifida) to help promote my idea and began sending out emails to every potential sponsor I could think of for every possible thing I thought I would need. Responses came in very quickly with people wanting to get involved which really took me by surprise because as I said I’m just Erin’s Daddy. Before I knew it I had 22 sponsors on board and had added a climber which still amazes me.

What started with a free myspace account has grown into an upcoming website (climbing4spinabifida.org) and a list of growing sponsors that include everything from tents to snow shoes. I feel that this will grow to be a very good thing and we will help a lot of people and raise awareness about Spina Bifida.

As we climb each of the 67 summit I feel that each person who has Spina Bifida or supports will be right there climbing beside us. We chose the 67 not to be different or gain anything. We chose them to make a difference in peoples lives and to let people know about prevention and awareness as well as benefit the people who are out true hero’s, the people who have Spina Bifida. They work hard everyday just to stay healthy but I have never seen people more grateful to be alive. Maybe we should all take a lesson from them and enjoy each and everyday we have and not complain about things because things could always be worse.

So as we continue to gear up and prepare to get our Expedition underway we are very excited to begin. It is with an excitement of not only climbing but helping others who need our help. It puts a warm feeling in my heart to be able to do this and we hope you will all follow along as we begin our Expedition in the Spring of 2008

                    

                           

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