Savannah's First Wheelchair & Vehicle Lift
Donation protected
Savannah Madison!!
As most of you know, Savannah was officially diagnosed with Laminin Alpha 2 Congenital Muscular Dystrophy a couple of years ago. I knew that our life would be different having a child with needs, but I was not (and still am not) totally prepared for the expenses that are coming our way.
What is this Muscular Dystrophy thing? LAMA2 is a type of MD that causes weakness and wasting of the muscles used for movement. Children with this type of muscular dystrophy often do not develop the strength or ability to walk. Atrophy of the muscles in her face and throat have resulted in feeding difficulties, along with the inability to gain weight at the expected rate. Also, with this type of MD, respiratory insufficiency can cause breathing difficulties leading to frequent and potentially life-threatening lung infections. As Savannah has gotten older, she has developed a curvature in her spine (lordosis) alongside deformities in her joints (contractures) in her hips, ankles, and elbows. Fortunately, this disease will not affect Savannah cognitively and she will be able to keep up with her peers academically.
What is the prognosis? Because of the serious health problems that occur in this form of the disorder, especially breathing issues, most children do not survive past adolescence.
What is the treatment? Currently, there is no cure for MD. Within the past month, Savannah has started taking steroids to prevent the acceleration of muscle fibrosis and joint contractures. We believe that with the combination of the steroids, consistent therapies, and a healthy diet we can slow the progression of her disease until they find a cure for our baby girl. I know that prayer is very powerful and God has a plan in store for us!
How can you help? So, in the past couple of weeks, we found out that Savannah will be ready for her first power wheelchair within the next three months! With that, comes great financial responsibility. As most of you know, the insurance system is very skewed and we do not get any sort of financial assistance. I refuse to quit my job, sit at home, and collect social security because I believe that with hard work and dedication, anything is possible. I want to be able to prove to my daughter that you can be the change you want to see in the world. With that, I am asking for help from my friends, family, and others to help fund my daughters wheelchair & vehicle lift to give her the independence and quality of life that she deserves.
As most of you know, Savannah was officially diagnosed with Laminin Alpha 2 Congenital Muscular Dystrophy a couple of years ago. I knew that our life would be different having a child with needs, but I was not (and still am not) totally prepared for the expenses that are coming our way.
What is this Muscular Dystrophy thing? LAMA2 is a type of MD that causes weakness and wasting of the muscles used for movement. Children with this type of muscular dystrophy often do not develop the strength or ability to walk. Atrophy of the muscles in her face and throat have resulted in feeding difficulties, along with the inability to gain weight at the expected rate. Also, with this type of MD, respiratory insufficiency can cause breathing difficulties leading to frequent and potentially life-threatening lung infections. As Savannah has gotten older, she has developed a curvature in her spine (lordosis) alongside deformities in her joints (contractures) in her hips, ankles, and elbows. Fortunately, this disease will not affect Savannah cognitively and she will be able to keep up with her peers academically.
What is the prognosis? Because of the serious health problems that occur in this form of the disorder, especially breathing issues, most children do not survive past adolescence.
What is the treatment? Currently, there is no cure for MD. Within the past month, Savannah has started taking steroids to prevent the acceleration of muscle fibrosis and joint contractures. We believe that with the combination of the steroids, consistent therapies, and a healthy diet we can slow the progression of her disease until they find a cure for our baby girl. I know that prayer is very powerful and God has a plan in store for us!
How can you help? So, in the past couple of weeks, we found out that Savannah will be ready for her first power wheelchair within the next three months! With that, comes great financial responsibility. As most of you know, the insurance system is very skewed and we do not get any sort of financial assistance. I refuse to quit my job, sit at home, and collect social security because I believe that with hard work and dedication, anything is possible. I want to be able to prove to my daughter that you can be the change you want to see in the world. With that, I am asking for help from my friends, family, and others to help fund my daughters wheelchair & vehicle lift to give her the independence and quality of life that she deserves.
Organizer
Abby Rayfield
Organizer
Wentzville, MO