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Meet little Boone. He is 15 months old and needs our help. Boone was diagnosed with Infantile Spasm Syndrome which is a rare and debilitating seizure disorder. These seizures have kept Boone from developing past 6 months old. Boone stopped smiling and talking to us. He also has sensorineural hearing loss. This is permanent nerve damage that will require hearing aids for both ears. Boone has been to Helen Devos Children's Center where they have begun an intensive medication regiment to stop the seizures. Along with this horrific diagnosis, he was also diagnosed with Williams Syndrome. This is a genetic condition that affects many aspects of his development including his heart. Boone has an obstruction above the coronary artery as well as supravalvular aortic stenosis, a narrowing of the pulmonary artery. This is requiring an extensive open heart surgery that will be scheduled in the next month or two. Children with Williams Syndrome need costly and ongoing medical care. His family has made several trips to Helen Devos Childrens Center in Grand Rapids and need help to offset the costs while they are off work for his upcoming surgery and appointments. This is a very hardworking family and are always the first to give when someone is in need. Now it is our turn to help them! Help us rally together to get little Boone to smile again.
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