My Nephew, Wyatt

This post I write with a heavy heart. I only have two nephews and they are brothers and their names are Cullen & Wyatt. They are beautiful, healthy, happy boys who are HILARIOUS! They are so snuggly & wonderful. Cullen is 2 & Wyatt is 1. Their parents are my brother, Justin & his wife, Blythe. Justin is in the Army currently serving in Iraq (will be home in July!!) and they are stationed in Seattle (across the country from us!).

Blythe is a carrier of the disease adrenoleukodystrophy, ALD. Her father had it & he passed away from it in his 40's. If you've ever seen the movie Lorenzo's Oil, you have a basic idea of what it is. As far as tests have shown, Cullen does not have it but Wyatt does. A quick rundown of it is:

Demyelination is the stripping away of the fatty coating that keeps nerve pulses confined and maintains the integrity of nerve signals. This process inhibits the nerves ability to conduct properly, thereby causing neurological deficits, including visual disturbances, auditory discrimination, impaired coordination, dementia, and seizures. Demyelination is an inflammatory response and nerve cells throughout the brain are destroyed. Boys develop normally until the onset of symptoms occurs. Symptoms typically rival those of attention deficit disorder before serious neurological involvement becomes apparent. The symptoms progress rapidly and lead to vegetative state within two years, and death anytime thereafter (from the ALD foundation website).

There is a study that boys who have it can get into where they will have access to Lorenzo's Oil which is proven, but not by clinical trials to stop the onset of symptoms. The ONLY way to get the oil is through this particular study. Justin & Blythe submitted Wyatt to be considered. The other day they found out the study will not be occurring due to lack of funding. They are unsure of what to do. There are other things they can do such as keep Wyatt on a low fat diet & Justin even found that mustard seed oil has similar properties to Lorenzo's & may have the same effect. They are considering doing that. However, the diet is a lot of work, financially difficult & going to get harder as he gets older. Wyatt also has to start going for MRI's & they are unsure of how often he will have to have MRI's. Justin has been doing as much research as he can to figure out how to help his son & he is doing all of this while at war. They are also getting Cullen retested to make sure he absolutely doesn't have it.

Another issue is that Justin & Blythe have a desire to be missionaries & they wanted to go to the Ukraine. Now, with Wyatt's health being a huge concern they have faced reality that overseas missions will not be happening. They are considering still being able to do inner city work but that won't even happen for another 2 1/2 years if at all (as once again money is an issue), as that will be when Justin is done in the Army.

Justin & Blythe haven't lost hope for trying to get Wyatt into studies & get him the help that will save his life. This company, unfortunately, has a hold on Lorenzo's Oil. It is not right for them to not make it available to the public, however, the oil is not FDA approved. So that may be a factor into why only those boys in that specific study can receive the oil. Justin & Blythe are going to write their congressman & even try to get onto a "your stories" news station there in Seattle. They've joined a community of families going through this on facebook to get ideas & support. It is a very rare disease that not many know about & there isn't much funding for research & help.

All of this to say, we need your prayers! We don't want to lose our lil Wy Wy. If you can, join STOP ALD on facebook & join the page they have started titled "Stand Strong for Wyatt Remington". If you know of anyone who has gone through this or knows of it & knows ways to help, please let us know! But most of all, Justin & Blythe would cherish your prayers. They are relying heavily on God but feel at a lost as to what to do, who to trust & how to help their precious son.

The following pictures are of their family when Justin was home on his R&R in March of this year:

This last picture is of their family shortly after Wyatt was born