Jacob, my 3 year old, has been recently diagnosed with a very rare syndrome. I can't list the name in case birth parents ever search and find this post...inherited disease.

Seeing some specialists today and over the next few weeks. Could really use some prayer. Thanks!

Mike.

**UPDATE DETAILS**

Here is the scoop. I have to be vague with the name of the syndrome because it is very rare and a search on the name might lead to Aldeer and to me. We want to keep our privacy from the birth parents.

A few months after we adopted Jacob in 2015 we received word from the birth mother via DHR that she had just been diagnosed with a very rare connective tissue disease. She wanted us to know in case he ever showed signs. She has a multitude of health issues that had been unexplained until she got her diagnosis.

We had genetics testing done at UAB and it was confirmed he does have the syndrome, just no issues form it at this time. So for now he is very healthy as far as we can tell. But there may be things going on so we have to get several baseline tests and studies done to see what's up.

The syndrome doesn't always manifest itself the same in every person. Can be severe or mild or a mixture. Common issues are early onset severe arthritis and joint issues along with scoliosis (teen years), retinal detachments, other eye issues, hearing loss, heart issues, and a few more less common symptoms. There is at this time no cure or even anything on the horizon. The joint and spine issues can be mild or very debilitating. Same with the rest of the problems. At this point we don't know what to expect until things start happening.

Today was his pediatric cardiology appointment: Praise God his heart is perfectly normal and fine. We can check that potential problem off the list.

Next is audiology for hearing loss, then rheumatology and orthopedics for bone/joint/connective tissue studies, then to eye doctor for a check, then to an endocrinologist for some other studies.

So...lots of questions to be answered. I can say with confidence that we will be alright no matter what because my God is capable to sustain us through anything. I know He loves Jacob and my only job is to make sure that Jacob gets the proper teaching and training in the Truth of the Gospel and to be the example lived out in front of him.

So if y'all could, remember my son who we have been blessed with since the first day he was placed with us as foster parents. He's awesome and I pray that he will not have to undergo any serious complications. Thank you.