Ask anyone who knows our mom and they will tell you what an amazing, kind hearted woman she is.  Despite constant pain and muscle spasms she is never without a smile. She is a fighter and the most inspiring woman we know. Here's her story. 





In 1987, our Mom began to experience spasms in her neck which were eventually diagnosed as a rare and progressive neuromuscular syndrome known as Generalized Dystonia, a disorder which causes sustained muscle contractions resulting in twisting and repetitive movements and abnormal fixed postures. These spasms grew worse and worse over the years, and slowly the disorder began to take our Mom away from us.

Our family researched and sought out every available treatment option ranging from large doses of Botox in the contracted muscles and selective denervation surgery to a baclofen pump and deep brain stimulation. However, in spite of these treatments, by 2006, she was wheelchair bound as her body bent in half and contorted to the left.


In spite of her physical limitations, Mom’s community and family spirit never wavered. Though she was extremely physically limited and could not drive, walk, or even feed herself or brush her teeth without assistance, she would still take weekly trips to the senior apartments in town to visit the residents. True to her Catholic faith, she still regularly attended mass with a smile on her face. So great was her dedication and optimism in the face of her hardships, the priest used her as an example of good for others to strive for in his weekly sermons.

Though Mom maintained her ever present smile, the years between 2004 and 2009 were incredibly difficult. During those years, the disorder continued to progress and doctors gave her few options for treatments. The dystonia progressed to a point where Mom could no longer live alone, and required 24-hour live-in care.

In 2009, our family first discovered stem cells as a possible treatment for dystonia. Because it was not available in the United States at the time, Mom researched available options and found the Stem Cell Institute of Panama. In spite of its incredible promise to make her life better, before she would even consider this treatment, she remained guided by her Catholic principles and ensured the stem cells used were donated umbilical cells – not embryonic stem cells. Satisfied that no innocent life would be harmed to relieve her suffering, and though incredibly expensive, with the help of her sister, Mom was able to fly to Panama to receive treatment.

The results were nothing short of miraculous.

Within 2 months of receiving the treatment, we had our mom back. Her body straightened and with the assistance of a cane or walker, she was able to walk again. The treatment was so successful Mom was even able to begin driving again. She was so excited to have her life and mobility back, she studied for the driving exam like a teenage first time driver. She was so incredibly proud to get her drivers’ license back. Today, Mom can once again dance (her true joy in life) and cook for her children, and live a mostly independent life. She is able (and willing) to babysit her nieces, nephews, grandchildren, and grand-dog – all of whom love to stay at her warm and welcoming home.



Though the stem cells gave us our Mom back, the dystonia is slowly taking her away again. Because her disorder is progressive, Mom must get new stem cells every 18 to 24 months. Because stem cells are not FDA approved, they are not covered by insurance, and the cost must be paid up front and out of pocket.

Over the past 8 years, we have sacrificed and saved to ensure Mom is able to get the treatments she so desperately needs. However, the costs continue to rise, and we are no longer able to do this on our own. It has been almost 2 years since Mom’s last treatment, and we can see the effects of the dystonia creeping back into her life. She is beginning to have more trouble walking, and her muscles are beginning to contract once again. One of us is getting married in November, and we want to make sure Mom can dance at the wedding.

We have once again reached out the Stem Cell Institute of Panama seeking treatment. The cost of the treatments has now risen to $20,500. While Mom is much better than she once was, she is not able to work due to her condition and simply cannot afford this treatment on her own. While we will continue to support her and provide whatever assistance we can, we need help to help her not only for this round of treatments, but for future rounds as well.

Our mom gives all she can to anyone who asks. Though she does not have much financially, she supports others with her generosity of time and spirit. It is humbling for us to ask for help, and it is not something we do easily or lightly. But – we cannot fathom watching this terrible disorder take our Mom away again.

Thank you for taking the time to read our story. Anything you can give – even if only emotional support – is appreciated and welcomed.

Aleisha Sylvester, Cliff LaCour, & BJ & Joany Pool