Saturday, April 4, 2009

Pray for Arvil

I don't think I've shared this here before, but this is really important.
My nephew Arvil, who just celebrated his first birthday, is in desperate need of prayers, as are the rest of his family.
You can read his story here at Arvil's Angels, a blog that my brother has been writing about the situation.

Here is part of the latest post:

We're back.

Not necessarily where we want to be. But here we are, back at Primary Children's MC.

Here is the scoop:

We came yesterday for a scheduled MRI. The MRI showed definite signs of progressing vasculitis in Arvil's brain. To translate, the blood vessels in his brain are constricted due to inflammation of the blood vessel walls. As a consequence of the vasculitis, certain areas of the brain are not getting the nutrition that they need. The MRI images that we saw show that Arvil's brain has actually begun to shrink because of this, and that he has had at least one additional stroke.

In addition to this information, Dr. Benedict, our neurologist, also informed us that she had just received results of a genetics test that had been ordered back in January. Arvil tests positive for the genetic defect associated with Krohn's disease and Blau syndrome. The current theory is that Arvil is exhibiting a "non-classic" presentation of Blau Syndrome, a rare auto-immune disorder that typically exhibits in childhood. It usually presents with eye disorders, rashes and arthritic joints. It does however, cause vascular inflammation and some liver problems which, together with the gene, point toward Blau syndrome.

Not good news at all. Please join us in praying for little Arvil and his family.
Thank you!

3 comments: said...

I hold him in my thoughts.

Morgan Street said...

I will keep baby Avril in my prayers! Tell your family to stay strong for him.

hillari said...

I just went to the blog and read his whole heartbreaking! I hope they are able to treat this so he can grow and develop normally. When you have children of your own, I think you can really feel the pain of other parents, even if you haven't actually experienced what they are going through. I will pray for him!