Despite all the challenges 4-year-old Leo has faced in his young life, there is one word that best describes him: HAPPY!
“Leo is extremely laid back,” said his mom, Kristin. “He always approaches life with so much joy and hope.”
Leo was born a happy, healthy baby boy in January 2014. As he grew, he hit every growth and learning milestone. By age 2, he could speak up to 20 words, follow one- and two-step instructions, recite his ABC’s, and count to 13. By all accounts, he was a typically-developing child.
All that changed by the time he turned 3. Leo’s speech had begun to deteriorate, and he started having seizures that gradually increased in type and frequency. In March 2017, Leo had an EEG and was diagnosed with Epilepsy. When he wasn’t getting relief with anti-epileptic medication, doctors ordered an MRI, which showed brain deterioration. The family was referred to the Mayo Clinic in November 2017, where they received a devastating diagnosis: Batten Disease.
Batten Disease is a life-limiting, neuro-degenerative disorder that causes seizures; loss of speech, sight, and the ability to walk and eat independently; childhood dementia; and ultimately death, usually by age 12. There is no cure.
Now at age 4, Leo has lost his ability to talk. He can no longer walk unassisted, and he has trouble with fine motor skills. His vision is starting to deteriorate, and he has involuntary muscle movements. Despite these challenges, nothing stops him from enjoying life.
“This disease can be frustrating to him as his abilities decrease with time,” said Leo’s dad Travis, “but he is always up for the challenge of finding a new way to work around it. He is a very happy boy who loves his family and school.”
Leo’s daily life includes many therapies and doctor appointments, but his favorite activity is preschool. Like any other 4-year-old, Leo loves socializing with other children, playing with cars, and dancing to music, especially the piano.
As you might expect, a terminal diagnosis is devastating to receive. Leo’s family deals with constant grief, knowing their time together is limited. Rather than focusing on Leo’s length of life, they choose to focus instead on his quality of life. They make an effort to appreciate every little smile, making memories every chance they get, taking countless pictures and videos, and making every single day together count.
“The hopes and dreams you have for your child are forever changed with this type of diagnosis,” said Kristin and Travis. “We can’t ask ourselves, ‘Will he be an athlete? Will he be an honor student?’ My parenting goal is simply to make him happy. As long as he is happy, all is right in the world.”