Rare Disease

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

Alice: One of a Kind

So the time has come for me to finally put pen to papering write Alice’s story. I have tried on many occasions over the past three years to do so but as you know dealing with every day to day life with a loved one that has a death sentence hanging over them is really hard. Life is like…

Darling “Cerise” Cherry

Cherry is a darling three and half years old little girl. Little more than one year ago her parents learned that she has Vanishing White Matter Disease (VWM). VWM is a very rare disease, approximately 250 cases reported to date in the world. It is characterized by the troubles in…

Emma’s Dazzling Smile

Emma Hope Gilbert was born on October 6th, 2010, a beautiful and seemingly healthy 7 pound 3-ounce bouncing baby girl.

She became an answer to her parent’s prayers and a very welcomed baby as she was the first grandchild on both sides of the family. Ryan and…

Princess Ainara

Beautiful Ainara came to this world September 1, 2009. Beautiful just like her mom Sonia. They looked like sisters, if I put the two pictures, I could not tell who is who.

Brave and Beautiful Emerson

has a sister to lean on ….

Emerson’s Mom says: “September is Leukodystrophy awareness Month, and since I don’t talk about it often, my oldest has a form of Leukodystrophy…there are many types.

Micaiah’s Journey with Vanishing White Matter Disease

Until January 22, 2016, two-year-old Micaiah was a completely normal child.

The pregnancy and birth were problem free, and she met every developmental milestone. She was an unusually sweet and cheerful child…