As FightSMA grew so did the collaborative experiences of the brave mothers who faced the daily battle of caring for a child with spinal muscular atrophy. FighterMom was launched in 2005 as a program created by these amazing mothers as they fight to win awareness and funding to beat a disease that affects thousands of children. FighterMom is an organization for any mom who wishes to raise money, win publicity, work with researchers, and make her case in Washington regarding her child’s disease. In their journey with SMA, Fighter moms have learned lessons that they want to share with any mom or family member or caregiver who is fighting any disease or condition and who wants to become an advocate and activist.   

What exactly is spinal muscular atrophy and whom does it affect? Spinal muscular atrophy encompasses a group of diseases that affect the motor neurons of the spinal cord and brain stem and is the leading inherited cause of death in children under two. These critically important cells are responsible for supplying electrical and chemical messages to muscle cells, and without proper input from motor neurons, cells do not function properly and thus atrophy. Degeneration and death of motor neurons in the brain stem and spinal cord produce weakness in the muscles used in swallowing, breathing, and operating the limbs. SMA affects infants, children, and adults worldwide and is estimated to occur in one in 6,000 to one in 20,000 births. Between one in 40 and one in 80 “normal” men and women carry the gene for SMA. When both a man and a woman carry the gene, chances are 25 percent that a child born to them will manifest SMA. While SMA was identified decades ago, there is still a great deal of confusion as to the diagnosis, treatment, and genetic counseling that should be provided for those affected with this disease. Some questions have been answered through advances in molecular genetics, and with more funding for more research, more answers will follow.

How can FighterMom assist parents of a child with SMA? The FighterMom program grew out of a decision by moms fighting one particular disease to share what they’d learned with any mom fighting any kind of health-related foe that has attacked their child. They believe that the “lessons and experiences—though taught in the battle against one disease—could have universal application. The specifics of one disease might be unique, but the trials, the emotional highs and lows, the dark days, and the victories could be those of any mom.”   Based on that belief, one of the best resources FighterMom has to offer is The FighterMom Manual. It was created as a “survival guide” of reference tools to assist mothers and others taking on the challenge of “doing something” when their daughter, son, grandchild, niece, or nephew has been diagnosed with SMA or any other life-threatening chronic disease. Information is provided that will help readers determine the resources they will need to take on the role of a fighter mom. In establishing if you are right for the job, The FighterMom Manual advises the reader to ask themselves three questions:

• Do you have someone you can really count on?
• Do you have a time of the day you can control?
• Can you stay hopeful?

If you can answer “yes” to at least one of these questions, then your job as a fighter mom will be a bit easier.

As with any organization, it is the people within it that shape it and bring it to its highest potential. Martha and Joe Slay are the pioneers of FightSMA, responsible for putting spinal muscular atrophy on the map. Martha is also FighterMom’s founding “Mom.” Holly and John Bolton from Huntersville, NC have two children with SMA. The Bolton’s formed a local chapter of FightSMA that they call Eleanor and Jack’s Buddies/FightSMA Carolinas and have made trips to Washington to meet with Representative Sue Myrick, Senator Elizabeth Dole, and Senator Richard Burr. They have also advocated for extensive coverage of SMA with the Huntersville media, all the while caring for two children with the disease. In June of 2001, another devoted parenting team, Michelle and Mike Calise, formed the Rhode Island Chapter of FightSMA calle Corinna’s Angels. Their beautiful daughter, Corinna, was diagnosed at 11 months with Type I spinal muscular atrophy, the most severe form of the disease. The Calises have been an instrumental force in raising awareness and the necessary funds for research, and so have countless other parents, family members, and caregivers of those diagnosed with SMA.

Fighter moms are not only committed to the advocacy and fundraising aspects of their child’s disease, but also in ensuring that their child’s life is filled with happiness and experiences of joy. Michelle Calise said that she and her husband never let Corinna see when they are sad, discouraged, or, at times, feel broken by SMA. She is only to see her parents as a strong, loving couple—a couple who love their little girl no matter what. If they need to cry, they cry in the car, the shower, the supermarket but never in front of Corinna. The more I learned about the people who make up FighterMoms, the more I saw how this type of attitude was the rule, not the exception, as were the testimonies of joy that the children with SMA project to everyone who comes in contact with them. Not only are these children lucky to have such amazing parents, but these parents feel lucky to have their beautiful children.

As with all non-profit organizations, funding is an ongoing part of keeping its doors open. For more information, visit the FighterMom Web site at www.fightermom.org . From the Web site, you can also request a copy of The FighterMom Manual to be sent to you or someone you think would benefit from it. Join the battle and help fight the disease that is the number one cause of genetic deaths in children under the age of two and affects thousands of children and their families every year.

Amy Elizabeth Alexander, an EP contributing editor, currently lives in Upstate New York, next door to the horse farm on which she was raised. She’s enjoyed living all over the country but says there is no place like home! Over the last few years, she has begun inspirational speaking, which she truly enjoys and has also written her first memoir entitled, Life At Breakneck Speed. If you’d like to read more about Amy and her non-profit foundation, check out her Web site at www.spinaltimes.org.