Meet Kaleb and Mia

A Regular Boy and a Regular Girl, being Kids

Physical therapy and various physical activities help these two retain their strength.

Kaleb and his sister Mia were diagnosed in November of 2013 with a neurodegenerative illness called Late Infantile Neuronal Ceroid Lipofuscinosis, also known as Batten Disease.

Batten disease is a fatal, inherited disorder of the nervous system. Mia and Kaleb both inherited a defective copy of the TPP1 gene from each parent. Tripeptidyl peptidase 1 (TPP1) is the enzyme responsible for clearing the waste in our cells and without this enzyme the cells get filled with waste and end up dying. Over time, affected children suffer cognitive impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease become blind and bedridden. The life expectancy for Batten is 6 to 12 years of age.

Although Batten disease has already robbed Kaleb and Mia of so many things, Kaleb is still a regular boy in so many ways. Kaleb is a sweet, happy and playful 5 year old little boy who enjoys life. He loves cuddling, spelling words on his iPad, watching his favorite movies/shows, running in his gait trainer/walker, looking at pictures in books and playing with balls, cars, trains and trucks. He loves music. Andy Mineo is his favorite singer. He is a pretty picky eater, but pizza, mac and cheese, yogurt and pancakes are his favorites. He doesn't really like candy but he'll never turn down a piece of cake. Kaleb loves Mickey Mouse, Nemo, Toy Story, the Minions and has had a crush on Rapunzel since before he was one. He loves to swim and recently developed a love for roller coasters.

Mia is still a regular girl in so many ways. Mia is a happy, cheerful and playful 6 year old little girl who loves life. She loves coloring, helping out in the kitchen, watching her favorite movies/shows, attempting to take steps on her own again, music and the swings at the playground. She loves to eat, her favorite meals include pizza, mac and cheese, yogurt, quesadillas and eggs. Mia loves the Minions, SpongeBob, Mickey Mouse, Minnie Mouse, Nemo, Lilo & Stitch, The Powderpuff Girls and My Little Pony. She loves to swim, ride roller coasters, ride jet skis and attempting to ride her big sister's bike and scooter.

Mia is also taking part in a clinical trial for Batten disease. She is one of three patients in the US receiving this treatment. The preliminary results are quite promising; nothing has ever stopped or slowed down Batten disease and results show that this treatment has slowed it by 80%. Miss Mia is making history and enduring biweekly hospitalizations for research in hopes no child with this type of Batten disease never has to lose skills.

Physical therapy and various physical activities help these two retain their strength. One of Kaleb's goals is to stay healthy and strong enough to take part in a clinical trial just like his sister.

Now, have their very own Rifton bicycles to cruise around the town.