Peyton's Story
Peyton is a 3 year little girl with type 1 Spinal Muscular Atrophy. SMA is the leading genetic killer in children under the age of two.
What is Spinal Muscular Atrophy?
Peyton's Story
Peyton was born on April 14, 2008 in Milwaukee, Wisconsin. She was a healthy baby girl. Her lungs were strong as was her body. Peyton went home from the hospital with a clean bill of health to her mom, dad and big sister. In the first three months, Peyton had some difficulties with eating, and spitting up. However, her parents thought that it would go away. Along with the eating issues, Peyton was also not meeting any milestones for her age. Peyton could not hold her head up, put weight on her legs, or roll over. At her checkup, the Dr.‘s sensed that something was not right, and ran tests.
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 3 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. Her mind is unaffected, she is just trapped in her own body. Peyton and so many other children are affected by this rare genetic disorder. Over time, we can only hope that the cure will come!!
What is Spinal Muscular Atrophy?
- Spinal Muscular Atrophy kills more babies than any other genetic disease.
- SMA is incurable, untreatable, fatal, and underfunded.
- The gene is carried by seven million potential parents, most unknowingly.
- SMA is an autosomal recessive neurodegenerative disease characterized by the dramatic loss of spinal motor neurons, resulting in muscle weakness, atrophy, and in the worst cases, the loss of ability to swallow and breathe. The mind remains unaffected, while the muscles waste away.
- SMA presents in a broad clinical spectrum and is classified into three types based on disease severity: type I, type II, and type III. Approximately 65% of all new SMA patients are type I severe or type II.
- SMA occurs when a vital gene (“survivor motor neuron” gene or “SMN”) is deleted or mutated, preventing the creation of a protein necessary for muscle strength. A second, nearly identical copy gene, SMN2, is present in all SMA patients. SMA disease severity correlates inversely with increased SMN2 gene copy number
Peyton's Story
Peyton was born on April 14, 2008 in Milwaukee, Wisconsin. She was a healthy baby girl. Her lungs were strong as was her body. Peyton went home from the hospital with a clean bill of health to her mom, dad and big sister. In the first three months, Peyton had some difficulties with eating, and spitting up. However, her parents thought that it would go away. Along with the eating issues, Peyton was also not meeting any milestones for her age. Peyton could not hold her head up, put weight on her legs, or roll over. At her checkup, the Dr.‘s sensed that something was not right, and ran tests.
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 3 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. Her mind is unaffected, she is just trapped in her own body. Peyton and so many other children are affected by this rare genetic disorder. Over time, we can only hope that the cure will come!!
Peyton's Song, written by The Boots Rock Bank
FIGHT
FIGHT