A DeKalb Middle School seventh-grader with spinal muscular atrophy keeps moving forward and focusing on happiness, according to her mother.
Hannah Perkins is the daughter of Andy and Jennifer Perkins. She was diagnosed with Type I SMA during infancy. SMA is a form of muscular dystrophy that is passed on genetically to children by their parents. The disease involves the loss of nerve cells in the spinal cord.
SMA affects all muscle systems, including sucking, swallowing, digesting food, excretion and breathing. Respiratory complications are a challenge. Children with type 1 SMA are not able to hold up their heads, roll over, crawl, sit up without support or walk. All of their muscles are extremely weak, especially muscles in the legs, upper arms and neck. The brain is not affected.
For 12 years, the Perkins family has recognized August as Spinal Muscular Atrophy Awareness Month.
“The statistics and ways to manage SMA have not changed much over the last 12 years we have been faced with it,” Jennifer Perkins said. “For us, one of the most vital pieces of information was learning to manage the disease while we wait for a cure. With information discovered on the Internet and in contacting other SMA families, Hannah continues to thrive as best she can. Milestones are measured differently by the Perkinses.”
Since a cold can be fatal for Hannah, she accesses her education via a live audio/video link with her classmates from her Waterloo home. She also receives direct instruction from her teacher in her homebound classroom. She began her school year as a seventh-grader at DeKalb Middle School a few weeks ago.
“A great accomplishment, considering the grim future described by the doctors giving her diagnosis as an infant,” Jennifer Perkins said. “Hannah has shown me so much courage, and her desire to look at the bright side is inspiring. She focuses on happiness. She wakes up singing most mornings as we start her respiratory treatments.”
For Hannah, a typical day living with SMA consists of respiratory management. A suction machine and cough-assist device are used for airway clearance. She receives her nutrition via feeding pump through a gastrostomy tube. She receives occupational and physical therapy and wears ankle and foot orthotics. She relies on a ventilator for respiratory support. As SMA is a progressive disease, a tracheotomy was performed in August 2012 at Riley Hospital for Children in Indianapolis.
“I can say that some days go smoother than others. My husband, Andy, and I are always encouraged when we realize that Hannah is happy and excited about something. Although the disease causes muscle weakness, it has not weakened her desire to keep moving forward,” Jennifer Perkins said.
“Hannah continues to amaze us all with her abilities in using her computer, communicating in her own special way, and also using her Dynavox communication device and the communication software on her laptop. She enjoys learning new things and loves a challenge.”
During SMA Awareness month, the Perkins family lights a special candle in memory of those who have fought the disease and to honor those continuing their battle.
“We will continue to light our special candle each year, pray for a cure because this is how Hannah has taught us to roll,” Jennifer Perkins said. “You keep moving forward, doing the best with what you have.”
Article from The Star Newspaper
Written by Kathryn Bassett
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