Annie's Story

Meet Annie.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

At the age of three she was diagnosed with Hereditary Spastic Paraplegia type 56.

 

Things we find very easy in life, such as walking, getting dressed, and physical activity have been a challenge since the age of two for Annie.

HSP is a autosomal recessive disease that causes spasticity, amongst many other issues for the beholder. As this is a rather rare disease (1 in every 77,000), its most comparable and often confused with Cerebal Palsy. HSP has many varients. Annie has type 56, which increases the rarity to 1 in every 1,000,000.

From the age of four, Annie was put on an oral muscle relaxer, which provided her with mild relief from her spasticity. Unfortunately as time passed, Annie began to show negative cognitive changes due to the mental "fogginess" the muscle relaxant caused.

At the age of six Annie went through an intensive surgery to have a intrathecal baclofen pump inserted into her stomach, which fed her the muscle relaxant through a catheter that delivers into her lower spine.

The advancements were massive, yet the setbacks still found their way in.

intrathecal medications provide the advantage of removing the mental "fogginess", however it simply covered up the issue of spasticity. What it left was nightly muscle aches, monthly injections into her stomach (which has traumatized her), and a strong desire to trade anything in its place, unfortunately at that time, that was the limit of medical options...

Or so we thought.

Enter SDR.

Selective dorsal rhizotomy (SDR) is a procedure that trims the spinal nerves that are causing spasticity, This would eliminate Annie's physical limitations and reliance on muscle relaxants.

SDR is currently a field of medicine that is lead by the pioneer Dr. T.S. Park with St. Louis Childrens Hospital. He has completed over 4000 SDR operations, and is considered the only choice for Annie to walk on her own.

This will not be an easy or inexpensive process.

Annie will need intensive therapy in St. Louis for 3 weeks post operatively and then daily therapy for 6 months to a year after.

Beyond this, Annie's family is based out of Pensacola, FL.

Their insurance was not within network for St. Louis Childrens Hospital, and did not cover housing expenses, food, or travel.

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