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Luke and Meagan

In May of 2007, Glenn and Colleen McWilliams received news that their beautiful 3 month old twins were diagnosed with Spinal Muscular Atrophy (SMA), a genetic degenerative neuromuscular condition. Almost immediately after the diagnosis, Glenn and Colleen began work to develop a regional organization dedicated to supporting the nationally-based Families of Spinal Muscular Atrophy (FSMA). FSMA was founded in 1984 by a small group of families determined to find a cure and treatment for spinal muscular atrophy. Since that time, FSMA has grown to become the primary fundraising organization for SMA, and to date has raised over $43 million dollars to fund research, and to provide essential support and services for families affected by SMA.

Our work began in July of 2008 when Glenn and Colleen met a contingent of Bay Area parents and children affected by Spinal Muscular Atrophy, whose incredibly successful Concert for a Cure, helped raise funds to support FSMA. Concert for a Cure organizers generously shared all their materials and the search began for volunteers in the Sacramento region.

Meri Stratton-Phelps and Carrie Manriquez, both families who have children affected by SMA, joined the effort immediately. Since then, our numbers have grown to 15 very hardworking volunteers, all dedicated to partnering with FSMA in the cause to find a cure for SMA.

The McWilliams' Story

On February 12th, 2007, our precious twins Luke and Meagan McWilliams were born. We never could have understood that two tiny people could bring such incredible joy. The cloud we were flying on was high. Life was sweet and incredibly rich. At 2 months, we noticed that Luke was a little “floppy”. We were referred to a neurologist. One month later, as we sat in the neurologists’ office, we received the news that our beautiful son had spinal muscular atrophy (SMA) and he would not live past the age of two. Our world caved in. We were living our deepest and darkest nightmare. One week later Meagan was diagnosed as well. Our children were unable to withstand the disease and Luke died at 6 months and Meagan at 8 ½ months. A cure is aggressively being sought as we speak. Together with FSMA www.curesma.org , we have begun our pursuit to raise funds for research. We engaged in this quest in honor of our children as well as to ensure that no other child or parent ever has to experience what we and our children endured.

Ryan's Story

On August 1st, 2000, Ryan Manriquez was impatient to come into the world, and he was born after a mere two-and-a-half hour labor! The same speed with which he entered the world can be seen in him today as he zooms around in his red power chair.

Ryan appeared to be a perfectly healthy baby boy, reaching milestones such as rolling over and crawling at the appropriate ages. However, at about ten months old, Ryan’s parents, Carrie and Tom, noticed that he was starting to crawl funny. The pediatrician watched Ryan crawl and agreed something seemed “off”, so Ryan was referred to pediatric neurology. After several weeks of tests and observations, doctors told the Manriquez family that their son indeed had a rare condition known as SMA Type 2.

Doctors informed the family that Ryan would not learn to stand or walk. He would never run or be able to play Little League or soccer like other children. He would be confined to a power chair, would lose ability and strength over time, and his life would ultimately be cut short when the muscles that helped him breathe no longer functioned. Ryan’s parents thought their lives would be full of sad and depressing days. Tom’s saddest thought was, “I wonder if Ryan will ever get to be a Dad.”

However, Ryan proved to his parents and those around him that life with SMA could still be wonderful. Ryan grew up and enjoyed many things other kids did. When he was young, he enjoyed playing with his Thomas trains, and his grandfather even designed a special table for him that he could spin to have the trains go around the track. Ryan learned how to maneuver his wheelchairs with ease, and even takes them on the ramps at the local skate parks. Ryan has become an accomplished power chair soccer player, and he has also enjoyed skiing at Alpine Meadows’ adaptive ski program.

Ryan is 10 years old and in 5th grade.  When he's done with his homework, you can find him playing XBOX 360 with his friends, having nerf gun wars, or playing with his pets.  His favorite XBOX games are Madden '11 and Smackdown vs. Raw.  Ryan is a huge sports fanatic and his favorite football team is the Chargers.  He also loves music, and loves to play DJ on his iPod or in the car.  He has a great sense of humor and is always making his friends and family laugh.  Ryan has many pets:  his Canine Companion Lizetta, his guinea pig Bella, his bearded dragon Fragon, and his two goldfish Dorothy and Belle.  Although Ryan lives with SMA every day, he has a spirit and attitude that is infectious to those around him.  People always comment about what a happy kid Ryan is! 

Ryan excels in school, is extremely social and well-liked by his peers, and he always looks at the bright side of life. He often tells his parents about the things he CAN do in his wheelchair rather than focusing on what he can’t do. He has plans for the future to become a police officer or a professional poker player. His parents have no doubt that Ryan will find a way to accomplish all that he can dream of. Please give generously so that research for a treatment or cure can continue, and so Ryan and others with SMA can continue to strive for their dreams.

Aaron’s Story

On January 24, 2008 Robert and Meri welcomed their first child, a son, into the world 3 weeks early. Aaron was perfect. One day later they took their little boy home and began their lives as a family of 3. Over the first 2 months they got to know their little boy, and fell more in love with him each day. During his 2 month well child check, Aaron’s pediatrician commented that Aaron was not moving as much as he should, and recommended that he be evaluated by a pediatric neurologist. Aaron had already met his developmental milestones in many areas, and a referral to a physical therapist was all that was expected by Robert and Meri. The appointment was scheduled for April 21.

The neurologist’s examination showed that Aaron did not have normal reflexes, movement or strength. A list of potential diseases was mentioned. Spinal muscular atrophy (SMA), the most devastating disease of all, was reported at the top of the list. Their world was forever changed on May 21 when the results of the genetic test came back positive for type 1 SMA. When Robert and Meri asked Aaron’s doctors what they could do for their little boy, they were instructed to feed him, sing to him, and to love him for the time they had left. Aaron was given 2 years to live.

The day after they learned about SMA, Robert and Meri began searching for treatments, and for hope. They located pediatric neurologists specializing in SMA research at the University of Utah, and Stanford University, began a structured program of physical and respiratory therapy for Aaron, and made every effort to ensure that Aaron has as normal of a life as possible.

Aaron celebrated his fourth birthday with an ice skating party in 2012. This is another huge milestone in Aaron’s life, as only 10% of children with type 1 SMA reach the age of 2. Aaron is a happy, healthy, and thriving little boy. He has traveled to Oregon, Utah, and continues to make his annual visit to San Diego to see his grandparents. He has dipped his feet in the Pacific Ocean many times, attended a River Cats baseball game, visited Muir Woods, the San Diego Zoo, Sea World, the California Railroad Museum, the California State Fair, saw The Wiggles in concert, and has traveled up to Lake Tahoe to see the snow. Aaron maintains his love of animals, and is now learning even more about them through Zoo School, books, and educational movies. Aaron is now in preschool, where he joins his classmates on Skype, and is starting to learn to read. Aaron loves his Thomas trains, and enjoys playing “Sir Aaron Hatt” as he runs the extensive HO scale model railroad Robert built for him. Aaron is brave, bright, and full of love and laughter. Aaron’s continued good health, and relative strength are attributed to God’s good graces, the love and prayers from family and friends, a large team of experienced medical personnel, and parents who are devoted to Aaron’s care.

Robert and Meri know that great things await Aaron in the future and are anxiously awaiting the day when a cure is found for spinal muscular atrophy.

Where your money goes

Families of Spinal Muscular Atrophy (FSMA) is the leading charity that raises and invests funds for SMA research. Because FSMA is focused solely on developing a treatment and cure for SMA, no funds are invested toward other diseases. Over 70% of all funds raised is directed to research that will lead to a cure for SMA. FSMA also provides invaluable support to families affected by SMA. To date, FSMA has raised and invested $43 million dollars toward SMA research.

How your funds are spent:
72% to research
23% to patient services

5% to administration

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