Okay, I'll stop bombarding you- you didn't come to this blog to watch endless videos of my son, so I promise as soon as my adapter comes in I will post my newest projects for you....

I have been going back and reading on Stryder's history and this little boy has gone through so much.
We started our journey when he was pretty little and they thought maybe he had cystic fibrosis. After that we learned that he should have been speaking and he wasn't. We have been told he had cancer and Maple Syrup Disease, both they say are still possibilities. I believe that it is the EDS that is making all these tests come up different than most.

Stryder's collagen is defective. That's the basic definition of Ehlers-Danlos Syndrome. Some people with EDS show very little signs, while others have major complications. Stryder is on the extreme end and while the Dr's believe he has many problems, I feel that it is all because his collagen is weak. His little body is always repairing itself, rendering the blood test results low or high in areas where "normal" children shouldn't have. Collage is the most abundant protein in the body and provides strength in tissue, including the heart and blood vessels and eyes. This means that Stryder can have an aneurysm anywhere and we have been told by several Dr's this is very likely because of how "bad" his collagen is.

Stryder has been tested for Vascular EDS, which came back negative. There are five other types and some do not have genetic testing available just yet. We have been in contact with a Dr. over the internet and while she cannot diagnose over the net, she believes Stryder has the classical type. We will have to make trips to Baltimore every six months for treatment and to get a plan of action.

Because Stryder has had so many problems in his short life, it is believed that he does not have a long life span, but really, who is to say that. We have been through a lot. I know that hearing that your son does not have cancer is supposed to be a good thing, but what happens when your child has all the symptoms of cancer and yet there is no treatment and no cure. It's not a good thing anymore.

EDS is not always fatal and in truth, hypermobile EDS is almost never fatal.  There is chronic pain and a few other problems, but really it's not life threatening in most. Unfortunately, some EDS patients seem to have a lot of problems and a lot of  life threatening problems with the heart and bowels and scoliosis, which Stryder is starting to show because his muscles cannot hold his back straight.
We are still testing and there are still a lot of unanswered results. The geneticist at the Mayo wants to test for the other types of EDS, although they are only 50% accurate. When we were there, she said that we shouldn't do them, but now she says that he has so many positive signs that he should. I do not want to take the chance of the test coming back negative but there is still a 50% chance he did have it. We know what his problems are and we are aware that he has a lot of inside problems as well, we deal with them as they come-that's the best we can do.

Fundraising Raffle for Stryder
Stryder and I just got back from the Mayo clinic a couple weeks ago and while we are happy to have results, most are not the ones that we wanted to hear. We went back to the Mayo after being there in July where he was diagnosed with Childhood Apraxia of Speech. It is a disorder that makes it hard to plan for words, in other words, his brain doesn't tell his mouth what to do with the words. He had intensive speech therapy two times every day for six weeks as well as music therapy. He started with very few words (somewhere around ten) and now can speak many words, although he does sound like a robot now and has some more language disorders that were revealed.

Stryder has been diagnosed with a rare genetic disorder called Ehlers Danlos Syndrome (EDS) and to put it simply, it means that he does not have the collagen that you and I have in our bodies and since our bodies are made up of a lot of it, it means that there is a chance that Stryders internal organs can break out/rupture and he can die instantly. There are six types of EDS and we are waiting for genetic tests that will tell us if he has the vascular type, which is the most dangerous and will most likely cause a short life for him-there is no cure for this disorder.Because he does not have the collagen in his joints, he can bend them backwards and it causes chronic pain because the ligaments and muscles are doing things they are not supposed to do. We went on Monday and got him fitted for some braces that should help with his walking. He will have to go through surgeries when he is older and will end up in a wheel chair.


On top of the EDS, we also found out that Stryder's Neutrophils count was very low; this is the same blood count that children with leukemia have that makes them so sick. After further testing, the results show that he has a pancreatic disorder, another fatal disorder with no cure that can cause organ failure. They are still processing results from some of these tests as well as many others that will include his language problems. To be honest, I stopped listening to what they think things "might" be.

Stryder has a long road ahead of him and this is only the most recent information. You can read more about his journey on our Caring Bridge site. I try to update it as I can, but in short, Stryder has a lot going on and will for the rest of his life and we will need to make more trips to the Mayo clinic to get the help he needs.


Your name and contact number will be recorded against ticket numbers, and you'll receive an email with your ticket numbers once your payment has been received.  Prizes will be drawn on December 24, 2011 by Stryder himself -(with Kasiah helping him).

Funds will be transferred to Stryders Trust Account at Mid Oregon Federal Credit Union

CLOSED