| This is our precious little 3- year old niece, Sydney Grace Potjer. She is an incredible gift from God. She is full of love and smiles, and her mommy, daddy, and family love her very much. "When the sun was setting, the people brought to Jesus all who had various kinds of sickness, and laying his hands on each one, he healed them." -Luke 4:40 We've been asking God to heal Sydney. When she was only a few months old, Syd was diagnosed with Type I SMA, Spinal Muscular Atrophy. SMA is the number one genetic killer of children under the age of two. It destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and swallowing. Sydney is mostly paralyzed, and is unable to swallow, eat, drink, cough, crawl, walk, hold her head up, sit up, stand, turn her head. She is fed with a tube, and her parents are required to use a suction machine every few minutes to remove the saliva from her throat. Most of us swallow by reflex and don't even notice. She also uses a coughing machine which forcefully removes liquid from her lungs so they don't fill up. This is a painful procedure that Sydney takes in stride. It is heartbreaking to watch this little lamb endure that especially when there is nothing we can do about it. There is no cure or treatment for SMA. However, we believe that in the same way God created the world in Genesis 1:1, He created Sydney. We also believe in the same way Jesus healed the people who were brought to him in Luke 4:40, he still has the power to heal Sydney today. We ask for your prayers for Sydney, for our family, for her doctors, and for a cure for SMA. We also ask you to consider helping us help researchers find a cure. Families of Spinal Muscular Atrophy is an organization dedicated to finding a cure as well as offering support and resources for families of SMA. Please vist www.fsma.org for more information. If you order a Pfeiffer House Songs for Kids Volume I or II CD , we will donate $10.00 to FSMA in your name. Or, would you consider making a donation? Pfeiffer House Music is in no way associated with FSMA and does not profit from any purchases of these CD's or donations. If you have any questions, please let us know. Thank you very much for your prayers and support. Steve & Kristi Oostdyk Pfeiffer House Music Listen to Sydney's Song of Love produced by Songs of Love Foundation. |
| Purchase a Best of Songs for Kids CD for $10.00 and we will donate the proceeds to FSMA.org. |
| What is SMA? THE DISEASE Spinal muscular atrophy (SMA), the number one genetic killer of children under the age of two, is a group of inherited and often fatal diseases that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing. WHO IS AFFECTED? SMA is one of the most prevalent genetic disorders. One in every 6,000 babies is born with SMA. Of children diagnosed before age two, 50 percent will die before their second birthday. SMA can strike anyone of any age, race or gender. One in every 40 people carries the gene that causes SMA. The child of two carriers has a one in four chance of developing SMA. THE TYPES OF SMA Type 1, or Werdnig-Hoffmann Disease, is the most severe form of SMA. Children with Type I tend to be weak and lack motor development, rendering movement difficult. Children afflicted with Type I cannot sit unaided and have trouble breathing, sucking and swallowing. Type I SMA strikes infants between birth and six months. Type II is slightly less severe. Type II patients may be able to sit unaided or even stand with support and usually do not suffer from feeding and swallowing difficulties. However, they are at increased risk for complications from respiratory infections. Type II SMA affects infants between seven and 18 months old. Type III, also known as Kugelberg-Welander Disease, is the least deadly form of childhood-onset SMA. Type III patients are able to stand, but weakness is prevalent and tends to eventually sentence its victims to a wheelchair. Type III SMA strikes children after the age of 18 months, but can surface even in adulthood. Type IV is the adult form of the disease in which symptoms tend to begin after age 35. Symptoms usually begin in the hands, feet and tongue, and spread to other areas of the body. Adult Onset X-Linked SMA, also known as Kennedy's Syndrome or Bulbo-Spinal Muscular Atrophy, occurs only in men. Facial and tongue muscles are noticeably affected. In addition, these men also often have breast enlargement known as gynecomastia. Like all forms of SMA, the course of the disease is variable, but in general tends to progress slowly. SMA does not affect sensation and intellectual activity in patients. It commonly is observed that patients with SMA are unusually bright and sociable. RESEARCH In 1999, investigators at The Ohio State University replicated SMA in a mouse model. The researchers have demonstrated that when the mice have high amounts of the SMN2 gene, which is present in all human SMA patients, the SMA phenotype is corrected and they develop normally. These findings support the conclusion that large amounts of the protein could act to prevent the damage caused by SMA or even reverse the impact of the disease. Since then, many more important research steps have been made. For details, please see SMA Research. The current focus of research is on finding an effective treatment for SMA. This research was funded in large part by the volunteer driven, not-for-profit organization Families of SMA - http://www.fsma.org |
| Sydney Grace Potjer Visit Sydney's Website. |