Very Special Angels - Our Story

"Wow Twins, God has chosen us to be parents of two special babies."
These were David and Dana’s first thoughts after hearing they were having twin girls.
They were soon to realize how very special these twin girls would be.

Cassidy Marie and Skylar Anne were born on March 7, 1997, to David and Dana Swanson of Richmond Hill, Georgia. Cassidy and Skylar weighed in at a healthy 7lb.1oz and 5lb.13 oz. But at two months, mother’s intuition led Dana to believe something was very wrong. She was worried about their head control and their low muscle tone. At 5 months, after many doctors’ visits, the family received the devastating news that the girls had Spinal Muscular Atrophy (SMA) type 1, also known as Werdnig Hoffmann’s Disease. Imagine hearing the news your beautiful daughters have this disease called SMA and not having any idea what that meant. Their worst nightmare began to unfold.

"SMA – Number One Genetic Killer of Children under Two."
" SMA – your daughters will die before the age of two."
" SMA – your daughters will never sit or walk."
" SMA – no cure or known treatment."
" SMA - take them home and wait."

The family immediately started searching for help with this relatively unknown disease. They soon realized this was not going to be an easy task. There seemed to be no hope and no answers to their many questions. Cassidy and Skylar’s grandmother (Anne Meguiar) began searching the Internet for doctors somewhere who held the knowledge that they so desperately needed. After hundreds of hours on the Internet they found the answers they were looking for. To their surprise, there were researches all over the world aggressively searching for a treatment and a cure.

Their first trip was to Cincinnati, Ohio to talk with doctors who were beginning the first drug trials ever for SMA. These doctors gave the family the hope they needed to begin their fight for Cassidy and Skylar. Their next mission took them to Newark, New Jersey to meet with one of the nation’s leading pulmonary doctors, Dr. John Bach. A child with SMA’s biggest threat to life is respiratory complications. Dr. Bach was aggressively working with the special respiratory needs of these children. In their first two years of life the girls have traveled by plane, helicopter, jet and train as a result of the family’s desperate search for help. They are very grateful to the many caring people who have been willing to go that extra mile to help.

Despite the obstacles Cassie and Skylar must face each day, they enjoy life to it’s fullest. They enjoy the same activities as other two-year-olds; they just require help in doing them. They love swimming. In the water they don’t have the pull of gravity and can move their arms and kick their legs. They love flying through the air in their hammock and riding in their wagons outdoors. They are very smart and eager to learn and work on their computer daily. Blues Clues, Elmo, Disney movies, books, and puzzles are also favorites. Without a doubt Shania Twain is their favorite singer. They especially like "Man I feel Like a Woman" and sing along to the part "Uh, Uh, Oh". Their grandpa (Ricky Meguiar) wanted to make sure they heard all the classics and introduced them to the Righteous Brothers and the Blues. These girl's enthusiasm for life is contagious and their determination is truly inspiring.

Cassidy and Skylar defied the odds and celebrated their 9th birthday in March 2006, at Disney World. Sadly, three months later Cassie lost her life to this deadly disease. Cassie and Skylar's courage and perseverance have made them true ‘Miracles". They have taught us a much deeper meaning to life and what unconditional love is all about. Their compassion, inner strength and courage have inspired us to work even harder for a cure or treatment for SMA. Because of the severity of the disease, we don’t know what the future holds. As devoted parents, family, and friends we are determined to do whatever it takes to conquer this devastating disease. Researchers worldwide have made significant progress to discover the secrets to a treatment and eventual cure for SMA. Please get involved and help us in our battle to put an end to it’s destruction.

We strongly believe in the Power of Prayer and ask to be remembered in this special way.