Michelle :: Adult with Spina Bifida

I was born with Myelomeningocele (L4/L5) and hydrocephalus on April 3, 1971. Not long before I was born, most babies with SB died due to either infection caused by their spinal cord not being surgically closed after birth or due to untreated hydrocephalus. I was truly born at the right time! Another thing that worked in my favor was being born in Chicago and Children's Memorial Hospital in Chicago was pretty much the birthplace for the treatment of babies born with SB. In fact, the Spina Bifida Association of America started off in Chicago with just a few parents. Amazing what a grassroots effort can turn into.

I had about 30 surgeries by the time I was 10 years old. Thankfully, the majority of those were done before age 6 so I don't remember much. Even though I had many surgeries and physical issues growing up, I feel I had a pretty typical childhood. I went to a regular school and attended regular (mainstreamed) classes, had lots of friends, went to summer camp, played with my sisters, fought with my sisters, loved playing with my dolls, and loved to swim. I also went on many trips with my family - California, Mexico, Florida, Ireland. My parents did their best to not let my having spina bifida keep me down - even with my leg braces and crutches.

As I grew up, I always knew I would be independent and live on my own. My parents told me so as I grew up, so I had no other frame of thought. I got my first job at 16 being an annoying telemarketer, learned how to drive at 18 and moved out when I was 25. I decided to move to Florida with a friend from high school and so I quit the job I had the time (working in a law firm) and packed up my car and drove down here in January 1997. I have been here ever since! There really is no comparison to the weather from Florida to Chicago. Florida wins hands down!! Moving down here was the hardest thing I have ever had to do. It wasn't (and isn't) always easy, but so worth it. I wouldn't change my decision to move out for anything. I still go back home for Christmas and usually in the summer and my family comes visit me. It's a nice arrangement!

My most recent job I had was at a small family-owned company that made and installed counter tops. I was their production coordinator. Unfortunately, I developed a severe pressure wound 4 years ago that required many lengthy hospital stays, so I had to resign and go on Disability. My 20 year work history worked in my favor though, as I make much more than people who are on Disability and have never worked. My wound is finally healed and I'm hoping to be back working in 2012. I miss working and making my own money!

Life with spina bifida can be difficult at times, but every life is presented with challenges and hardships. Mine just happen to be physical. As strange as it may sound, I am grateful for that. There are many more wonderful things about my life than negative things. I try to remind myself of that fact everyday.

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Kumaka :: Child with Spina Bifida

We found out that our precious son would have Spina Bifida at 19 weeks. We went to that ultrasound to find out the gender of our baby, and we got a whole lot more than we bargained for. We were told our "options" multiple times, until we were more sick about the word termination than the diagnosis. We struggled with finding the understanding of the enormity of what we would be facing. It was so overwhelming. But once he was born, he was perfect in our eyes. He's had quite a few challenges and hurdles to jump over. He's had multiple surgeries, mostly on his feet which are proving to be quite difficult to correct. He is a full time crazy wheelchair boy, but is learning to walk with RGO's. At the moment he is in a spica cast because both of his hips were out of socket and he had bilateral hip surgery to fix that. He's had heel cord lengthening multiple times, as well as a couple of bony procedures on his feet. He has battled pneumonia, and multiple UTI's.


But his sweet spirit, his courageous attitude makes him a warrior. He does not really think he's different. He's five right now and has only once mentioned the fact that he can't walk. He has four brothers who shower attention on him, and he really is a part of the crew. Their friends adore him....and love him and play with him. He is so very awesome.....he amazes me every single day.


He is a huge blessing in our lives and we wouldn't change a thing about him. Our only wish is that he didn't have to go through quite so much...but really that is what makes Kumaka who he is. His full name is Kumakalehua...which is Hawaiian. It means "the Strength or Foundation of the home". He is that for us. We love him more than anything.

Check out their family blog at http://fromamomofboys.blogspot.com/

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Jeanne :: Adult with Spina Bifida

Hi! My name is Jeanne Knapp. I am 35 years old and I have a disability called Spina Bifida. I can walk with a quad cane for the most part but I use a power chair, manual wheelchair, or a walker for long distance. I walk with my knees bent so my knees started hurting in 2002 after I had worked for the Shawnee Mission School District for a year which is why I started using wheelchairs, etc. I have no braces on my legs but I do have inserts in my shoes so I have to wear shoes that are big enough for my inserts (a women's size 6).


My insides are the parts of me that have been affected by SB the most. I have nerve damage to the bladder, kidneys, and intestines. I have a shunt in the left side of my head which is a small fiberglass pump that drains excess fluid from the head (a condition called hydrocephalus) but my shunt probably isn't needed anymore. I haven't had any problems with it since I was 5 or so.

Even with all of my problems (irritable bowel, knee pain, etc.) I accepted Christ as my Savior at age 4 or 5 and God had seen me through all of them and given me joy. I still live at home with Mom and Dad and have been surrounded with loving, supportive family and friends. I was able to get through K-12 and graduated with honors from high school and college (two college degrees: associates in applied science with an emphasis in business office management and a bachelors in the area of early childhood special education).


God has seen fit to give me opportunities to date and have as much of a normal life as any single lady would have as possible. I would like to get married and raise a family (adopting kids, not having kids naturally due to the health issue I deal with). However, if God does not want me to get married then I will try to be content with whatever God allows me to experience in life.

Jeanne's blog is at Jeanne's Life with Spina Bifida

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