Azrael needs your help! Please share.

This is for my brother overseas. Many tests are being done to try and identify his illness. Azrael has become the one to help others if they can figure this out.

Update2/11/24:

1st birthday! Still doing tests. Still don't know what it is. :(

Update 12/18/2023:

His son was thought to have an unknown type of leukodystrophy that the doctors couldn't identify. Now they are thinking it's gangliosidos GM1. More and more testing.

Update Nov 17th 2023:

Azrael is a sweet little boy. His time is limited, doctors don't know if it's going to be 2 years or 8. But it's supposed to be short and painful life.

Help us find him a treatment in the world. Czech republic gave up on him.

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Azrael was born on 18th of January 2023.

From the 34th week of pregnancy he wasn't gaining weight even though everything else was fine, so we were told to wait and doctors were checking the placenta and umbilical cord with ultrasound every day.

The delivery went without any complications, he had high apgar score, his reactions were fine and everything appeared normal. His weight was low - 5.7 lbs, but it didn't seem to affect him.

Except for one thing - he didn't want to latch to the breast. They said, he might be just tired, so I should wait and try at home. The first breast milk I was giving him was on a spoon.

Next day we invited a certified lactitian. She said, his tongue tie is short and had to be cut. That was done 5 weeks later, unfortunately the waiting time was long. We were feeding him with a shot glass sized cup.

While waiting we also noticed, that he didn't open his mouth, at all! Maximum of 0.16 in while yawning. We got an appointment with Osteodynamics for blockages, but the waiting time was 2 months.

The minor outpatient surgery on tongue ties unfortunately didn't help. And he bit the surgeon' finger quite nicely.

There were also issues with reflux. At night, he would throw up and it got in his nose and he started choking. We had to give him first aid several times.

After a few months of going every week to Osteodynamics, he opened his mouth to 0.4in - so a huge improvement, but still not enough to drink from the breast or a bottle.

We did a lot of research and found a syndrome, that can cause issues with mouth opening. His jaw was always a little bit in causing an overbite, and no one was able to check his palette. So we got an appointment on the other side of the country, with specialists that know this syndrome. He had 5 months and still fed with a cup. There they confirmed that he has Pierre Robin sequence. His soft palate isn't okay, but it's not a huge problem, so they recommended another check in 6 months.

But around the 5th month, we noticed that his motor skill development had stopped. He had issues grabbing a toy or turning over. We got an appointment with a neurologist. Waiting time again over a month. We started with rehab, did a lot of blood tests and there was no improvement after 14 days.

We were sent to the hospital for an MRI and more tests.

When the results came in, our world turned upside down. The reason why he was gaining so slow was because of a metabolic disorder. But the MRI showed delayed myelination of white matter aka Leukodystrophy.

Now he is 10m old and since the MRI results we are going from hospital to hospital, from rehab to rehab, one specialist to another. We are waiting for the results from genetic tests to know exactly, but from what we were told - we are waiting to find out weather he has months or years to live. This disorder is 99% progressive and there are currently no treatments or a cure. So we are trying everything in our power to find something or someone that can help stop this or cure him.

Right now, he's a happy boy, smiling all day, curious about everything around him, but he still can't grab a toy, he can't hold anything for more than a few seconds, can't sit or crawl and from what doctors said he won't be able to walk. He is eating mixed solids and drinks breast milk from a shot glass, because his jaw muscles are tight and do not allow him to open his mouth very far.

All tests are being rushed now because of a new pregnancy and leukodystrophies are genetic disorders.

Azrael has also an older sister - healthy 2 1/2 year old girl named Ysera. She loves him, constantly gives him hugs, kisses him, holds his hands, shows him toys, makes him laugh, tries feeding him. She really cares about him, but constant running from doctor to doctor, hard time to feed him and rehabs take most of any time we can spend with her.

Although she's really strong and she tries hard every day, it's showing on her.

We were always hard working people.

Azrael's mom is an IT specialist.

Azrael's 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.

With all the rehabs and therapies, gas, lost wages, food supplements, tools for jaw and rehabs, nights in the hospital etc. we already used all our savings and have had to take loans, we have no other option than to ask people for help in trying to get Azrael well again or at least a comfortable life before he departs. And from what we have researched isn't a nice way to go. If anything, his disorder could help future cases and to possibly find a cure.