Leoblog has been put aside.
During the recent weeks it has totally overgrown.
With moss, berries, wheat, forest…
In the meantime a (still) terminally and chronically ill patient subject to a program of home ventilation
- a ventilator and tracheotomy child travels through meadows and forests on his bike, learns to swim, hunts wild animals, lights bon-fires, sleeps in a hammock under the stars, plays hare and hounds, spends time with his peers, a bit older friends and family.
He is a four-year-old boy, happiest in the world, spending wonderful, sunny holiday,
just like every kid deserves!
Unfortunately, a shadow has been cast on this carefree time.
During a conference in Orlando Leomum had a chance to meet Lauren Savin - an amazing young women suffering from CCHS.
Lauren was dealing amazingly with the disease.
She was cheerful, optimistic.
She had a good life, a family, two daughters.
On 8th August Lauren passed away.
She was twenty-nine years old…
We have to find a cure for CCHS. As soon as possible!