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 spent the majority of 2007 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 diagnosed her with Dysautonomia.

In October 2007, Amanda had her 6th Tethered Cord release surgery. It was a long surgery, almost 9 hours. She was definitely tethered, and we were told that once inside they found a mess. Her Spinal Cord as well as the nerve root endings, were all attached to scar tissue. She had to lay flat for 15 days!

In May of 2008, while trying to find some answers to her many health issues, we went to California. While in California, Amanda developed a Spinal Fluid leak that required surgery to repair. That surgery was pretty hard on her, and she spent about 2 months in the hospital.

Our journey then took us to Cleveland, Ohio in June. There, Amanda's autonomic function system was tested. It was found that she has Autonomic Neuropathy. And, she will need tons of tests to find out the severity. That is still a work in progress.

In October, we went to New York, where we were told that Amanda spinal cord is tethered yet again, and she will need surgery to repair that. We also learned that she has a Chiari Malformation as well as a kink in her brain stem. We will try some things before acting on surgery to treat this.

Amanda still suffers from daily headaches, she has not been able to attend school. She is unable to sit for more then ½ hour before her head pain becomes unbearable. We are hoping that we find more answers, and something that will help Amanda.

(Story and Interests were last updated October, 2008)