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.

---

Thank you for sharing your story, Michelle! We still need more stories, click here to share yours!

Harmanie :: Adult with Spina Bifida

Harmanie (age 29) is recently married and has worked hard to make her home accessible. She loves to dance and uses the skills and knowledge from her University education to contribute extensively to her community.

---

This story is one of a series of stories and videos submitted by the Spina Bifida & Hydrocephalus Association of Northern Alberta. Thank you so much.

Ryan :: Adult with Spina Bifida

Ryan (age 35) lives independently in an accessible condo downtown near his workplace. Since graduating from Grant MacEwan Community College, Ryan continues to work hard and has succeeded in the workplace. He enjoys traveling, watching sports and spending time with family.

---

This story is one of a series of stories and videos submitted by the Spina Bifida & Hydrocephalus Association of Northern Alberta. Thank you so much.

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

---

Thank you for sharing your story Jeanne! We still need more stories, click here to share yours!

Emm :: Adult with Spina Bifida

I was born in 1934 and was not expected to live for about two weeks. I was always a sickly child but was able to do all the ordinary physical things being SB. For many a year my mother would show my back scar to people until I was about 11yrs old when I then started to object to having my pants pulled down and shown off to all and sundrie.

I never knew the what it was that had occured to me as a baby until I was in my 50s even though I repeatedly asked various doctors but they would not say. Then, after I had done quite a bit of research myself I came across an article on SB and realized that it was what I had.

As far as being able to take part in any sports etc. I was very much limited as I would soon get very bad back pain but on the whole my physical abilities were quite good. I have enjoyed an active life playing badminton, swimming and always enjoyed ballroom dancing too. It is only now in my later years that I have become disabled due to my spinal weakness mainly brought on by old age wear and tear.

Emm is a Mother of 3/gran of 7/ grtg ran of 4, and lives in Norfolk, England.

---

Thank you for sharing your story Emm! We still need more stories, click here to share yours!

Tanya :: Adult with Spina Bifida

Tanya grew up in the small town of Menasha, Wisconsin. Born with Spina Bifida and Congenital Scoliosis, doctors encouraged her parents to place her in an institution, instead, they took her home. Tanya spent the first thirteen years of her life in and out of hospitals often with life threatening conditions. As a result, many had low expectations for her, but that did not discourage Tanya from living her life and doing what she wanted. Battling discrimination, especially in the school system, she graduated from high school in 1999 and received her Bachelor’s degree from the University of Wisconsin Oshkosh in Radio/TV/Film production and a minor in Communication.

Tanya resides in northeastern Wisconsin where she enjoys spending time with her nieces and nephews, as well as her dog Trevor and cat Emma.

Tanya uses her life experiences to motivate and inspire others to overcome their own adversities through public speaking engagements. If you would like to learn more about Tanya visit her website at http://www.tanyakrueger.com/

---

Thank you for sharing your story Tanya! If you or your child has Spina Bifida, and you would like to share your story, please email me at contact (at) spinabifidastories.com!

Sara :: Adult with Spina Bifida

I have SB L5 and hydrocephalus, I'm 30 and have never had a revision yet. I'm married and have two beautiful children and I never think my life is anything short of amazing. Sure it has its ups and downs made harder sometimes by the SB, but everybody has their issues, lol. My most stressful moments have nothing to do with SB.

---

Thank you for sharing your story Sara! If you or your child has Spina Bifida, and you would like to share your story, please email me at contact (at) spinabifidastories.com!