Believing for Blake 5K run/walk planned
NORWAY – The community is invited to participate in the Cure SMA 5K Run/Walk, Believing for Blake on Saturday, Aug. 9, in Norway.
Registration for this noncompetitive 5K includes a free event T-shirt for persons who register before Friday, July 25. Registration at Marion Park in Norway begins at 8 a.m. with the race starting at 9:30 a.m.
All donations received will go directly to fund research for finding a cure for Spinal Muscular Atrophy (SMA).
“This event is an opportunity for local families and friends in the SMA community to come together while having fun and raising money for a cause that is close to their hearts,” said Carli Kelly, race coordinator.
On March 8, 2013 Scott and Gwen (Ebeling) Sternhagen welcomed Blake as the second boy into their family. At six months old they started to notice he wasn’t bearing weight on his legs and he was not rolling over as he previously was. Blake was referred to a pediatric neurologist and in January of 2014 Blake was diagnosed with Spinal Muscular Atrophy (SMA) type II.
Blake most likely will never to be able to walk or stand, and sit without assistance. His muscles are very weak, with the weakest being his legs, upper arms and neck. He receives physical and occupational therapy weekly and has just begun aqua therapy for maintaining his muscle strength. Furthermore, he is on a respiratory treatment which he receives twice a day. Blake has had pneumonia twice since the diagnosis and was hospitalized in the PICU in Madison in March for one of them.
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 is the leading genetic killer of infants under two.
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.
Blake’s mind and spirit are great; he loves playing with his big brother and cousins. He faces a difficult road as his muscles will weaken over time, along with his breathing and respiratory system. He is receiving the best care from some great doctors, but currently there is no cure or treatment for individuals with SMA.
Donations of $20 for adults, 18 and over) and $15 for youth four to 17, children three or under are free. To register or to help fund a cure for Spinal Muscular Atrophy go to www.fsma.org/believingforblake.
“Your donation will help us get closer to creating a world where SMA is treatable and curable,” said Kelly.
For more information contact Carli Kelly at Carliannsternhagen@yahoo.com