Join Azrael's Battle Against Time

Hello!

Please hear what I have to say and take a few minutes to read my story.

My name is Azrael.

I'm an adorable little boy, spending most of my time in rehab, therapy and in hospitals.

I have an amazing sister Ysera and a little baby brother Zephyr. I love them and I would love to play with them more, but I can't. I can't even communicate with them...

Doctors say I'm sick. They say I might have only 5-6 years of life.

But I'm not ready to give up! I love life, I wanna live, I wanna play, I want to see the world with my sister and brother. I want to play chase with them and maybe draw a picture one day! Build Lego with them!

And my parents are not giving up either! We are fighting every day, doing all different kinds of therapies to prove those doctors wrong!

My hands and arms don't work. I can't grab a toy. But I'm trying over and over and I believe I'm getting closer every day.

I was born on the 18th of January 2023.

After my birth I couldn't open my mouth very much. Unfortunately doctors here just said "wait, it will get better in time"

My parents were feeding me with a steel shot glass since I couldn't open my mouth wide enough be breastfed or bottlefed. From the very first day.

When I was seven months, our lives completely turned upside down.

My body is stuck with motor skills of a four month old. I can't crawl or sit and based on doctors never will. My baby brother Zephyr is four months old and he can do more than me.

They did an MRI and said "hypomyelinization of white matter, disappearance of white matter," probably leukodystrophy

They said it's always progressive and I'll be getting worse. I will lose all my abilities. I won't be able to swallow food or even breath on my own in time. I won't hear, see, or even feel those warm hugs that I love so much.

My parents are not giving up though! Unfortunately those therapies are expensive. Food supplements too, my body is not absorbing minerals properly..

I am almost two years old with my mental health, I wanna play with toys, explore everything, but my body won't let me. My daddy and mommy help me with this every day. But they can't work full time.

I love books! But someone has to hold me

Doctors here gave up on me a long time ago. We're still waiting for WES results and other genetic results. But they don't care anymore. I'm already dead to them!

But my parents are in contact with the best leukodystrophy center in Amsterdam and also with Children's Hospital of Philadelphia.

My parents were always hard working people.

My dad is retired Military having served 21 years in the Army. 12 years spent in MEDEVAC saving lives and is trying hard to save at least one more.

This is me and my dad

My mom is an IT specialist. This is us

She carries me a lot around so I could see the world

With all the rehabs and therapies, gas, lost wages, food supplements, tools for jaw and rehabs, nights in the hospital etc. they already used all their savings and have had to take loans, they have no other option than to ask people for help in trying to get me well again or at least a comfortable life before I depart..

They want to work with doctors in other countries too.

If anything, my disorder could help future cases and to possibly find a cure.

My whole story and more pictures are on my Instagram Azrael's Journey @chanceforazrael

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Leukodystrophy refers to genetic diseases that predominantly affect the white matter of the central nervous system (CNS). White matter is tissue made up of bundles of nerve fibers (axons) that connect nerve cells.

Live expectancy:

Death may occur after a variable period, depending on disease severity, ranging from a few months in patients who present in the first year of life, a few years in patients presenting in early childhood and a few decades in patients who present in later childhood.

What is end-stage leukodystrophy?

Cognitive impairment. People with end-stage leukodystrophy may struggle with memory, attention, language, and other cognitive functions.

Movement disorders.

Seizures.

Breathing difficulties.

Swallowing difficulties.

Behavioral changes.

Most leukodystrophies are genetic. Many are inherited (passed down from generation to generation) but some can be sporadic mutations, meaning that a person did not inherit the disease from their parents.

Please help us give Azrael proper life!

Proper stroller, chair, support. Intense month rehabs in special centers. We can't do it without you!

Time is of the essence !