Sydney came into this world as a precious gift. A gift of love to her parents, a gift of friendship to all those lucky enough to have known her, a gift of courage and hope to all those that will continue to be moved by her memory. When we think of Sydney, we remember her infectious smile, her bubbly personality, her charm and wit, and most of all, her determination and will to live every day to the fullest. She inspires us to live fearlessly, to embrace every wonderful moment and really experience it. She inspires us to love each other despite our limitations and to help one another. She was always defined not by her disability but by all that she had to offer the world – she always wanted to know “how can I help?” She had a wonderful capacity for giving. If only we could all try and see ourselves and others the way Sydney did. She will continue to inspire us to live and love and to never give up. Sydney came into our lives bright and brilliant – forever changing us all….We love you and miss you, Sydney, with all of our hearts. Thank you for the gift of your presence in our lives….it was truly a privilege to know you. ~Kathleen Salus
This beautiful tribute was written by SMA Mom Kathleen Salus. The Salus and Potjer families were extremely close and Kathleen’s daughter Sophia and Sydney were the best of friends. Sydney will be missed by our entire community. May we all learn life’s lessons through the teachings of this beautiful SMA Angel. In memory of Sydney, $1580.00 was donated to The 200 campaign.
The results came back a week later, and in August of 2008, our world changed forever. Peyton was diagnosed with Spinal Muscular Atrophy. At the time we had never heard of SMA, but from what the Dr. told us, it was not good. We were told that Peyton would not live past the age of two, so we were to take her home and love her. Terrified, confused and lost, we went home. Instead of giving up, we, with the help of our family, have also started the fight of our lives!! We are going to fight as hard as we can, until the cure is manufactured.
Peyton has had many ups and downs over the past two and a half years. She has been hospitalized three times for respiratory illness. She has lost her ability to swallow, so she had to have a feeding tube put in her belly. Her muscle weakness continues to worsen, and it has also greatly limited her ability to speak. Her list of daily machines has also grown. Cough assist, bi-pap, and the pulse ox, machines are just a few of the them that are necessary for her.
While everyday, Peyton struggles and faces all these challenges, she also smiles!! Peyton is a feisty little girl, who loves her parents, and big sister. She wants to play Dora and watch movies. She is just trapped in her own body. Peyton and so many other children are affected by this rare genetic disorder.
We welcomed Taysen into our family on July 15, 2004. Our firstborn, we were over the moon in love and so thankful for a healthy child. He began sitting at 6 months old, and rolling shortly after that. He could not put much weight on his legs or lift his tummy off the floor. Taysen was diagnosed with hypotonia, and began physical therapy at 10 months. I remember one of the Dr.’s telling me that he would probably never be the best player on the soccer team, what i clung to, was the fact that he could be on a soccer team.
The next year, no progress was made with physical therapy. We took him to see neurologists, geneticists, rehab doctors with the same outcome. We were told there was no way he could have 2 rare genetic disorders; (since he was diagnosed with an adrenal disease shortly after birth) and to keep up with the physical therapy –he will eventually catch up. By then we had begun our own research and I will never forget the day I landed on the FSMA webpage. I knew in my heart, that was what Taysen had. I was so sick to my stomach that my baby, my perfect baby would never walk… would fight to breathe, would struggle with a simple cold, would face never-ending challenges his entire shortened life. We requested the blood draw for SMA and one week later, received a phone call to confirm our worst fear, Taysen had SMA. Based on his physical skills, he was diagnosed as SMA type 2.
There were many, many tears and feelings of helplessness during the next couple of years while we learned to cope with the fact that our son had a terminal disease. Taysen is our shining light. He fills our days with love and laughter. He has taught us things that we should be teaching him and he does it all with smile on his face. We will never stop fighting for our son, and will not imagine our lives without him. All of our SMA kiddos NEED this cure. They deserve it. Their families deserve it. We are making the commitment to raise money for Dr. Kaspar’s gene therapy program because it gives us much hope that we will see a cure or effective treatment in our son’s lifetime.