Jason and I got married June of 2007 and couldn't wait to have a family of our own. Both of us as a couple wanted to have 2 or 3 kids. April 2008 we were blessed and welcomed Madisyn into the world. She was the most beautiful and perfect baby. At the age of 6 months, I noticed Madisyn was not meeting different milestones and had a bad feeling in my stomach that something was wrong. I mentioned my concerns to her pediatrician at her 6 month checkup and she wanted to wait a little longer before doing testing. At 8 months old Madisyn was admitted into the local hospital with pneumonia. A month later we officially got the diagnosis of Spinal Muscular Atrophy. We were devastated. They just kept telling us to go home and love her, take lots of pictures and cherish these moments since she wouldn't live past the age of 2. Jason and I were living with my parents at the time saving up money to buy our own home. After searching and searching, nothing was in our budget. We knew one day Madisyn would be in a wheelchair so we had very little options to work with. In July 09 we bought our house a few houses away from my parents. The house is a small (just over 800sqft) rambler but was perfect for us. Knowing the size we figured maybe we could eventually build on one day. We are now planning the addition and after getting 3 estimates we are at a loss. The estimates are way more than we ever imagined. The house is only 2 bedrooms with the smallest bathroom ever. We want to turn Madisyn's current bedroom into a handicap accessible bathroom and build a bedroom onto the end of the house. Madisyn will be having VEPTR surgery April 29 which will make bathing much more difficult. With VEPTR they will be placing rods in Madisyn's back that attach at the top to her rib cage and the bottom to her pelvic bone. It will allow her rib cage to open more so her lungs have more room to open.
Madisyn at 3 years old taking up most of the bathroom. Also only has a 23" doorway
Your can follow Madisyn on her caringbridge:
www.caringbridge.com/visit/madisynmevissen or on her facebook page: Team Madisyn
WE NEED YOUR HELP. Please consider donating to our family so we can make Madisyn's life with SMA as easy as possible.
WHAT IS SMA?
Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.
Spinal Muscular Atrophy (SMA) refers to a group of inherited diseases of the motor nerves that cause muscle weakness and atrophy (wasting). The motor nerves arise from the spinal cord and control the muscles that are used for activities such as breathing, crawling, walking, head and neck control, and swallowing. SMA is a rare disorder occurring in approximately 8 out of every 100,000 live births, and affecting approximately 1 out of every 6,000 to 10,000 individuals worldwide.
SMA affects muscles throughout the body. In the most common types, weakness in the legs is generally greater than in the arms. Sometimes feeding, swallowing, and respiratory function (e.g., breathing, coughing, and clearing secretions) can be affected. When the muscles used for breathing and coughing are affected and weakened, this can lead to an increased risk for pneumonia and other respiratory infections, as well as breathing difficulty during sleep. The brain's cognitive functions and the ability to feel objects and pain are not affected. People with SMA are generally grouped into one of four types (I, II, III, IV) based on their highest level of motor function or ability. (www.fsma.org)
- Erin Ankrum Ward
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