Never Felt Brave

This is the story of the bravest person I have ever known, a boy named Jake. Jake was kind, rambunctious, and loving, and my best buddy for several years. Jake was my 3rd child, born healthy in 2004 and loving life his first 3 years.

At the age of 3, Jake's life began to take a drastic change. He started having seizures and began losing his language skills. He became clumsy and fell often. He became scared to walk without holding someone's hand. He cried daily in frustration, as he could no longer do things that he once could. He began having trouble seeing, running into walls as he walked around the house. At the age of 4 this sweet boy stopped walking, stopped talking, and stopped playing. He began to lose his eyesight.

When Jake was 5 he was finally diagnosed with a rare neurodegenerative disease for which there is no treatment or cure, late infantile Batten Disease. His life expectancy was 8-12 years of age.

Shortly after diagnosis Jake had surgery to have a feeding tube placed in his stomach.

Jake lost so much, yet he never lost his smile or sense of humor until medications and brain atrophy took it from him. Jake lost his life at the age of 9 in 2014. He was truly the bravest person this mom has ever known.

For my last birthday I was given the "Brave" key from my sister-in-law. I have never felt like a brave person. Any bravery perceived by others is a gift from God that has helped me cope, to help me be the best mom I could possibly be to my little boy and his two sisters.

Today I will be helping a wonderful friend celebrate her 47th birthday. I will pass on my "Brave" key to her, as when I think of the word "brave" I see her. She has lived with Diabetes for 34 years, and is now living with another rare disease, Stiff Person Syndrome. She also has other "stuff" in her life, making things even harder; however, she and has exuded bravery in the midst of her trials. 


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