Find a Cure for VWM – Medium

Find a Cure for VWM

Find a Cure for VWM
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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.

2 min readFeb 28, 2021

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I Love Two Who Are Rare

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Find a Cure for VWM
in
Leukodystrophy Awareness

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 would expect in…

3 min readNov 14, 2020

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Little Darling Aria

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Find a Cure for VWM
in
Leukodystrophy Awareness

Dapper Dax

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

2 min readSep 30, 2020

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Dapper Dax

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Find a Cure for VWM
in
Leukodystrophy Awareness

Loving Siblings: Gabriel and Letícia

Gabriel is 8 years old and Letícia 5 years old, both are bearers of Leukodystrophy, Vanishing White Matter Disease (VWM).

2 min readSep 13, 2020

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Loving Siblings: Gabriel and Letícia

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Find a Cure for VWM
in
Leukodystrophy Awareness

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 old…

2 min readSep 7, 2020

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Princesa Lara

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Find a Cure for VWM
in
Leukodystrophy Awareness

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

On October 4, at school, he had 6 seizures, being referred to an emergency hospital, where he remained in hospital for 45 days performing…

4 min readSep 6, 2020

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

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Find a Cure for VWM
in
Leukodystrophy Awareness

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 and wake up at night…

5 min readJul 18, 2019

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Noah The Real Superhero

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Find a Cure for VWM
in
Leukodystrophy Awareness

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 time of his…

3 min readJan 10, 2019

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My Dearest Matthew

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Find a Cure for VWM
in
Leukodystrophy Awareness

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…

3 min readSep 27, 2018

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Sweet Baby Vance

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Find a Cure for VWM
in
Leukodystrophy Awareness

Tadan’s Journey

Tadan was born a normal boy. Bubbly, chunky and happy baby. He hit all milestones but never got a full run.

6 min readSep 21, 2018

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Tadan’s Journey

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Find a Cure for VWM

Find a Cure for VWM

It is all about raising awareness for leukodystrophy called vanishing white matter disease (VWM) ~ while searching to find a cure...!

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