My name is Gena White.  I’m from South Carolina and have a two-year old son with Transverse Myelitis (TM).  I’m writing to share the story of my family’s participation in Accelerated Cure Project’s MS Repository program.  I hope it will help you understand more about TM, its relationship to MS, and inspire you to support or continue supporting the MS Repository program.

If you feel inspired just click on the Donate button to make a tax deductible contribution via credit card.  We appreciate your support.

Here’s our story…

One day when my son Will was about five months old, I was changing his diaper and noticed his legs seemed a bit limp.  We ended up in the emergency room where I was told he just had a fever.  After escalating the incident with our pediatrician, Will ended up in the hospital where he spent two days in the ICU.  They ran every test possible and concluded it was Transverse Myelitis.

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Transverse Myelitis (TM) is a neurological disorder caused by inflammation across both sides of one level, or segment, of the spinal cord.  Attacks can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers.  Symptoms include a loss of spinal cord function over several hours to several weeks.  In some cases it can be permanent.  What usually begins as a sudden onset of lower back pain, muscle weakness, or abnormal sensations in the toes and feet can rapidly progress to more severe symptoms, including paralysis, urinary retention, and loss of bowel control. 

Will was put on a high dose of steroids in an attempt to stop the effects of the Myelitis.  Fortunately it did stop spreading, but it did not reverse existing damage.  Will is paralyzed from the waist down and has to be catheterized every few hours to make sure his bladder is completely emptied and no kidney damage results.  He goes to physical and occupational therapy once a week to build up strength in his stomach and back muscles to help with his stability. 

Other than his inability to walk, Will is a typical two year-old in that he does not seem to listen when he’s told to do things and manages to get into everything.  Being on wheels makes catching up with him a bit harder.  It is very easy for him to get a head start.

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The Accelerated Cure Project was kind enough to include Will in its MS Repository program and in June, my husband Bill, daughter Dory, Will, and I all traveled from our home in South Carolina to Worcester, Massachusetts to participate as subjects. 

Although Accelerated Cure Project is an MS organization, through collaboration with the Transverse Myelitis Association, blood samples and data are being collected from individuals with all demyelinating diseases including TM, NMO, and ADEM.  Samples from individuals with these diseases serve as excellent controls for MS studies and vice versa.  Through this type of sharing and collaboration, the MS and TM research communities effectively multiply the value of its research. 

We feel strongly about supporting the MS Repository program because of the impact we believe it will have on curing TM and alleviating other families of having to endure what we’ve been through.  You can join us by making a financial contribution using the self-addressed envelope enclosed with this newsletter.  If you’re inspired by Will’s story you can even make your check payable to the Will White Fund, which benefits Accelerated Cure Project entirely.    

For more information about the repository and how to participate as a subject, visit www.acceleratedcure.org/repository and for more information about Transverse Myelitis, visit www.myelitis.org