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In Loving Memory Of Cassidy "Cassie" Swanson

Sunrise: March 7, 1997 Sunset: June 9, 2006

Cassie’s Memorial

(written by her mother – Dana Swanson)

I can’t even begin to express how devastating it is to know that your 9 year old daughter is living on borrowed time. But our Cassie Marie lived 7 years 3 months and 2 days longer then she was “supposed to”. And oh what a time we had. When a family is faced with the fact that just the act of breathing is a privilege, boy does that change your life. You learn things, appreciate things and don’t take a single moment for granted. It is a bittersweet life. There is so much pain but then…there is equally the amount of joy. You learn to appreciate things that others just pass by.

But don’t feel sorry for Cassie, for one thing she would be devastated if she knew you were sad because of her. She never could stand to see anyone upset. She had a wonderful life for a child so fragile and compromised. Our goal was to give her as normal a life as possible for as long as possible. Everyday she got up, was dressed, her tiara was placed on her head, and she started her day. Of course, she was sure to make everyone comment on how good she looked. Her self confidence and vanity was unbelievable for a child so handicapped. She swore she was a true princess and we have no doubt.

She attended school at home with wonderful teachers. She was in 3rd grade just like other children her age. She recently just passed her 3rd grade CRCT test, which just blew us all away considering she only goes to school a couple hours, 4 days a week. She traveled…only those closet to her know how incredibly difficult this is. She visited many states, attended Disney 3 times, had several zoo trips, went to the beach for a week every summer, and tons of other as we called them “roadtrips”. The beach trips were the ones, right nurse Mary? You should see us strolling down the beach. Cassie and her sister in their sport utility wagon loaded down with bipaps, marine batteries, suction machines, oxygen, umbrellas and so forth. But it was so worth every minute of it. She also just celebrated her 9th birthday in Disney World and was able to spend time with all the Disney princesses. It was a dream come true for her and Skylar. As she said, “The best birthday ever.”

She had a passionate love for animals and enjoyed spending time with her 3 dogs, 2 cats, fish, and a turtle. She went on walks and spent a lot of time swimming in her pool and sunbathing on a float. She spent countless hours listening to stories, which was one of her all time favorites. You could read to her and read to her and read to her and she would never loose interest and listen attentively as long as you could last.

With sheer determination she learned to operate a computer better than anyone and absolutely loved playing on it and watching movies.

She learned to talk. Another milestone that was never supposed to be. This was one of the biggest blessings. For such a sweet prissy little girl she had the deepest husky voice. She was able to vocalize how happy a little girl she was and told you she loved you over and over. She received and gave more hugs and kisses in her 9 years than people get in a whole lifetime. She also had such a wit about her, she was always cracking jokes and would laugh her little belly laugh and roll her eyes back sarcastically.

A few weeks ago my mother attended a conference in Washintgon DC with the top researchers and doctors in the field of SMA. They discussed the recent advances being made in caring for SMA children. During one of the lectures they spoke of two little girls from Georgia who had blazed the path for future children. Cassie and her sister are known as pioneers in the world of SMA. They were the first to try new methods of respiratory care that allowed them to live a longer more quality life. Countless other children are following in their footsteps and living better and longer lives because of them.

Cassie had wonderful nurses and therapists that meant so very much to her and took such good care of her. They helped raise her and she loved you all so very much. We all do. You treated her as if she were your very own little girl. We never could have made it this far without your help. You should all be so proud of helping a little girl beat the odds and have such a precious life.

She had our friends and a community that rallied around her and her sister from day one, and gave her so much love and support. We will forever be in awe and appreciation of how so many people took her and her sister into their hearts and supported them. Our charity has accomplished so much and has so much to be proud of because of the love and generosity of all of you.

She had a family who would walk to the ends of the earth for her. She had the best daddy and papa in the world. They spoiled her rotten and absolutely adored her. Everyone always commented on how much her personality was like her daddy’s. She was such a laid back, easy- going little girl, with a heart of gold. Her uncle Heath was her biggest hero. She said she loved that crazy guy and he was always there for her. She was always excited when uncle Richie’s family came over. She loved Trey and Alec her cousins, and she adored that baby Macey. She had a grandma – oh did she have a gamama. All I can say is that facing the toughest challenge of our lives, my mama looked the disease right in the eye, lead the way and never backed down, and still hasn’t. She is a driving force in the SMA world and has made such a difference with her pure determination and love for all these children. She has an absolute passion for this cause and I am so proud of her. Mama, Cassie loved you so very much. As a family I know our hearts are broken. I never knew that the feelings of pain and loss could be so great. But as a family we have to stay strong and hold onto all the precious memories and take good care of her sister.

And the most important person in Cassie’s life was her sister. Skylar Anne --your sissy loved you more than anything in this world. There is no way to describe how close they were. They went through everything together, good and bad. They always got sick at the same time, usually the exact same symptoms within 24 hours of each other. Dr. Shelley always knew to go ahead and make out prescriptions for two. They were the only ones who knew exactly what the other one felt. They were there for each other and gained strength from one another. When they were first diagnosed, I struggled with why did it have to be TWO children. I didn’t understand why. But what a lesson learned. I know why. They were each others source of comfort and strength. They rallied each other and I have no doubt that is the reason why she was able to stay on this earth as long as she did.

Cassie was what we called a wise old soul in a little body. She had seen and experienced more in her 9 years than most people do in a lifetime. To be as young as she was, she had such depth to her. She had such compassion for people and cared so much. If you knew her, you are truly blessed. Your life was touched by a true angel. I feel sorry for the people who should have taken the time to know her, because they missed out on so much. That is such a loss for them.

From the time of her diagnosis, we vowed to do everything possible for her. She had such a will to live. The only way we knew to cope with such a devastating disease was to do everything we could humanly do for her, and then ultimately it would be out of our hands. Well, our precious child got tired, and the time came where it was out of our hands.

David and I had such a fear of going to the funeral home yesterday and seeing our daughter. We were also very worried about Skylar. But when we finally did, we were overcome by an amazing sense of peace. She was not broken anymore, she was whole. It was as if this horrible disease had never even invaded her body. She was perfect and she was free. Skylar said, “Mama, she looks like a really princess now. Just like sleeping beauty.”

Cassie is our guardian angel in heaven now. She is watching over her little sister. She always did love to watch out for her. When we talked to Skylar really late Friday night about Cassie going to heaven, she asked if we would read her a book about heaven. She was having trouble understanding, and I had a book that I thought would help. I sent my mama and daddy to my house to look for the book. Well, anyone who knows Cassie and Skylar and how they love books, knows that they have tons of them, so we were worried about mama being able to find it. However, when she placed her hand in the cabinet the first book she touched was the exact one we were looking for. We told Skylar that was her first sign from her new guardian angel sister.

Cassie would always tell us how she wanted to dance. We would twirl and twirl her around in her chair. We called her a princess and she believed that she was one. She always told us that when she grew up she wanted to be a veterinarian princess and live in a big white castle.

I can see her now in heaven breathing without the use of a machine, eating the meals of royalty, and dancing her heart out in that big white castle.

Fly free with the angels.

Like I always said Cassie, I love you more than the world.

Today we celebrate you and your life.

This website is dedicated to all of the special angels who are living with and have died of Spinal Muscular Atrophy (SMA)

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and is not intended to replace and should not be interpreted or relied upon as professional advice.
It is strongly recommended that you consult a physician to assess individual conditions and needs.