Leukodystrophy Awareness

I Love Two Who Are Rare

A year ago from today, on Rare Disease day, we lost our sweet Jake at 4:02 a.m, Feb 28, 2020.

Little Darling Aria

Aria was born on 5–10–2019, alongside her twin brother Axel.
Aria’s life started off by achieving normal milestones as you…

Dapper Dax

On November 30, 2015, we welcomed our perfect, seemingly healthy baby boy into the world.

Loving Siblings: Gabriel and Letícia

Gabriel is 8 years old and Letícia 5 years old, both are bearers of Leukodystrophy, Vanishing…

Princesa Lara

Lara is a charming three-year-old girl. She was diagnosed with vanishing white matter disease (VWM) in 2019 at two and a half years…

HENRIQUE NETO STORY OF LEUKODYSTROPHY OF VANISHING WHITE MATTER from MANAUS/AMAZONAS/BRASIL

Noah The Real Superhero

We first noticed that something wasn’t quite right when Noah started walking, he would complain of pain in his legs…

My Dearest Matthew

Matthew was born on 14th November 1989. He was a good weight and all early developmental milestones were met. At around the…

Sweet Baby Vance

As a father, all you want to do is provide for and protect your family. There is a welcome ignorance to the dangers in life, the fact that children are not immune from disease and death. I relive daily, that walk to the meeting room in the children’s hospital, the news that our son has an incurable condition…