Make A Child Smile

Amanda's Story
written by mom Tommi

Amanda was born on Christmas Eve 1992, what a "late" miracle. Only 15 days late! She didn't start out life like the typical kid with Spina Bifida, she was born what appeared to be "normal". Then, life progressed, she always had symptoms, but I knew no different.

When she started to walk, she walked with a in-toe, I questioned her pediatrician who told us to take Amanda to ballet, and prescribed straight lateral shoes. Being young parents we did what we were told. As she grew, she complained of her back and legs hurting, I thought she wanted attention, finally I had a foot doctor look at her foot, and he said her foot was deformed, that prompted us to go to Shriner's, and they found something Neurologically wrong with my 7 year old, yes, it took us 7 long years to find out what was wrong with her. The Neurologist ordered an MRI that showed her spine was tethered. Then we were referred to a Neurosurgeon who wanted to wait and see....

We waited, and Amanda grew, causing a lot of neurological damage. We finally went for a second opinion, and found she needed surgery ASAP. The surgery was scheduled the next month. Surgery went fairly well, and when she woke up, she was in terrible pain, screaming and screaming. No one knew why. Well it ended up she was left with Neuropathic pain. Possibly from the spinal cord pulling for a long time in the wrong direction. Also, Amanda has a lot of damage and weakness to her lower extremities, mostly in part for us waiting and seeing, it caused irreversible damage.

The surgery finally took place in October 2001, the doctor was not sure where this Neuropathic pain was coming from so he performed an exploratory surgery in January of 2002. Following that surgery, Amanda was left with a hole in her dura mater and had to have surgery in March to repair that. Amanda also has a bladder stimulator, and has had several other surgeries on her legs. There are still a few more to follow. She also re tethered her spinal cord and needed to untether in September of 2004. And, yes, she is still growing, measuring in at 5'8". Hopefully she will be done growing soon.

Amanda manages to stay very busy, she is very active in different sports, she plays wheelchair basketball, she goes skiing, both down hill and water, plays hockey, and any other sport you can imagine! She also finds time to volunteer for the Starlight Starbright Children's Foundation. Among everything she maintains a 4.0 gpa. I as a mom, couldn't be prouder!!

On July 14, 2006 Amanda underwent yet another Tethered Cord Release. Making that her 5th release. This was a tough surgery, she had to lie flat on her stomach for 6 days, and then flat on her back for 10 more days. Following this, she left for rehab. She went to Shriner's to try to help her regain some of her strength.

Feb 2007- July 2007 (Amanda was in the hospital) Life has been full of surprises for us. Amanda has spent the majority of the past year hospitalized, and a new diagnosis has been added to the list. After months of tests, medication changes, and all of the other fun stuff they have diagnosed her with Dysautonomia. Dr. Frim thinks she should head out to Cleveland Clinic for a consult on that.

September 2007-- The date is set for yet another Tethered Cord release, it is October 22, 2007. Hopefully this will be one of the last times she heads in for this surgery. This will be the 6th in 6 years. High school is so far a struggle, especially from not attending 8th grade at all. She struggles daily with pain issues, and is barely able to make it through the day at school. She also is busy with lots of therapy to help her body prepare for such a rough surgery. With this surgery, she will lay flat for 15 days. Then gradually she will be able to get up.

We know there are still surgeries she will need to have, but with the grace of God, they will all be successful.