WAUKESHA — Diane Nienas, mother, author, inspirational speaker and certified life coach, has experienced 20 years of caretaking for her own terminally ill children. A mother of four, Nienas has now lost two children, Leo and Trent, but she never let that stop her from seeing the good in this life
Nienas will be releasing the first of a series of children’s books, “Living Life With Leo,” dedicated to the adventures her family experienced with Leo during his lifetime.
At age two, a rare, terminal illness called leukodystrophy caused the white matter surrounding Leo’s brain to deteriorate, exposing the nerves. Leo went from a happy, normal toddler to a boy stripped of all his motor functions, said Nienas. Within months, he was completely still and could only blink his eyes.
Through treatments, Leo was on the road to getting better, eventually using a walker in elementary school. But the damage was far too much; Leo went from a wheelchair to being bed-bound and passed away three-and-a-half years ago.
Throughout Leo’s lifetime, Nienas and her family adapted the mindset of living in the moment and decided to make each day the best it could be. They provided opportunities for Leo that any normal, adaptive child would be able to endure.
Source: ‘Living Life With Leo’