The Rhys Tree

Hello to all!! My apologies for the long gap in communication. SO...updates for Rhys are currently: We were finally able to have some genetic DNA testing completed and after 5 years and 7 months we have a diagnosis!! Rhys has a rare genetic disorder called Coats Plus Syndrome. Yes, both his Papa and I carry this crazy recessive genetic mishap! It's like "mating" with a lottery ticket and winning but kind of...backwards!! Haha. It is quite rare, only 40 cases known/studied. It is a type of Leukodystrophy, which involves calcifications in the brain, creating small stature, low birth weight, premature birth, anemia, low bone density, poor overall growth, gastrointestinal bleeding and more, all creating a cerebral palsy effect. So.....at least we have an answer!!! This does help in confirming and understanding him a little more, but it also does not give any so called "relief" in the matter. It is a progressive disorder which is always a scary term. Life expectancy has a quite varied range from age 2-30??? I am thinking it is a syndrome with multiple levels of progression, severity, care available, etc. (hard to know, not many studies produced at this time) At this point all we can really "do" is maintain him medically. I personally have more faith than that and we want to try to seek world renowned doctors that may have specialized treatments, aides or possible cures in this matter. That being said, I am still and always looking for more answers for this little boy. He deserves so much more. We want to continue to make his life one of quality and happiness. If anyone has any advice or information on cases like his, please share. We hope to raise funding for research and create a full on charity for this condition and possibly travel to doctors that have more expertise in the genetic field and/or more thorough or studied treatments. So we are on another mission!! I hope everyone is doing well and I hope we can all continue supporting this awesome little man. We always cherish your thoughtfulness and love.

Love, the Morgan Crew!!









“Previous, original  Post”


Hello to all.
Ok you guys, I have something to mention and ponder... serious things involving my personal life. Warning: long read, but very important and appreciated. As some of you know, our son Rhys has been diagnosed with Cerebral Palsy. Of course with him being born a little early, tiny at birth and brain bleeds, we knew there could possibly be some delays or damages done. (Officially diagnosed at 18 months) We cannot definitively figure out the cause after multiple doctors visits, but Cerebral Palsy is super random. Could be genetic in some cases, which we are looking into. He is unable to walk, stand or sit up unassisted at all, not able to speak, only "oohs" and "aaahhs" at the age of 3 years old coming up on 4 in January. So all in all and unfortunately, he is quite dependent, including not being able to feed himself, etc. This is a huge struggle as I'm sure 100% that we are not the only ones going through this type of struggle as a parent. I have recently been investigating some super intense bio mechanical therapies available for him that can quite literally improve his overall stature, structure, core strength, energy levels, and multiple increased abilities. It's called ABR, Advanced Bio mechanical Rehabilitation, you can look it up on YouTube to really get a more specific view of what Rhys is going through, as are other children with an amazing, emotional amount of improvement!! My question is..... since this does cost some money over a span of 3-4 years of continuous therapy and we all know that is hard to come by.... to my friends and family as a whole, would it be inappropriate to start a "Go Fund Me" or charity of some sort for Rhys, which could possibly expand the help in the future for other children if this is successful? How many of you would be willing to donate $1, $5, $20? Whatever you could without breaking your own bank as a cause to have a breakthrough moment to help a child who deserves better than this? I'm just curious. I have never done anything like this before and am honestly embarrassed to even be at this point. But I'm running out of options for him and I truly believe in this therapy, so far. I will be the one doing all of the therapies with the training provided and am hoping to shine some light on this method as it is based in Canada and originated out of the states. This doctor is a genius in my opinion! I want to make this more available to others in the future with my knowledge. But yes, I am fearful about being able to finance this. If Rhys' current insurance will not cover this, could we do it together as a team? I would appreciate any thoughts on this, as I am new to the game and don't know if it's smart, conducive or just plain stupid and begging for money. Haha. Please let me know your feelings as best as you can. I truly appreciate any feedback and I apologize that I rambled about this... I just want the best for my kid, just like anyone else. I am grateful for him and for all of you who took the time to read this all the way through. Thank you.  Much love,
Rhys, Dana and Brian & all families!!