Wednesday, November 26, 2014

Facebook update [pic] from Help Anton

I have had a few people ask me why we are doing the bone marrow transplant now instead of waiting for the gene therapy that Dr. Tolar is working on. I thought it was a great question so I'm going to answer it here just in case some of you were wondering the same thing or were just wondering why we are moving forward with the Bone Marrow Transplant. We have known about the Bone Marrow Transplant pretty much since we found about about Anton. We have followed Dr. Tolar's work closely and we were very hopeful that at some point Anton would get the Bone Marrow Transplant done. The first two years Anton was home we just didn't think the risk of getting the Bone Marrow Transplant done outweighed the risk of not doing it. He seemed pretty healthy (although he was hospitalized several times for infections). He didn't seem like he was in a lot of pain, and overall he had a great quality of life. As more time has gone on I have have seen countless children and adults lose their battle with EB. Most of the people who have passed away these past few years have Anton's type of EB and most of the people who have passed away have died before they turned 20. The harsh reality is Anton most likely won't live to see his 20th birthday unless we do something to intervene. During the past 6 months or so we have noticed Anton is in more pain than not. He is still happy and joyful, we can just tell that his EB is affecting his daily life. It seems like his quality of life is not what is could/use to be. Anton had a normal echo done on his heart in October of 2013 then in July of 2014 his echo showed that the left ventricle of his heart was dilating. At this point his heart is still functioning normally but I talked to the cardiologist at the patient care conference and he said almost always in patients with RDEB once the left ventricle starts dilating it will eventually turn into cardiomyopathy. (Cardiomyopathy is a weakening of the heart muscle or another problem with the heart muscle. It often occurs when the heart cannot pump as well as it should, or with other heart function problems. Most patients with cardiomyopathy have heart failure, "google") If Anton loses heart function he will no longer qualify for the Bone Marrow Transplant. Dr. Tolar spoke at the Patient Care Conference we went to this year and it was so amazing to see how far his research has come. It is FAR less risky than it was 2 years ago. It is hard to know how much Anton needs this when you see mostly happy posts on his facebook page. The harsh reality is Anton's eye lid gets stuck to his eye ball at night and when he opens his eyes it literally tears the top layer of his eye, he has a large wound on his knee that has NEVER healed in the almost three years he has been home, he is terrified to poop because the one time his stool was hard it tore the lining of his bottom causing extreme pain, he gets blisters in his throat that pop which makes him throw up blood, his fingers are fused together and he has lost almost all the function in his right hand because his thumb is fusing to his hand, bath time is painful instead of fun, he can't scratch his face at night without tearing all the skin off his nose. This sweet boy suffers so much and if we can help relieve just a little bit of his suffering we want to. Knowing that if Anton loses heart function he will won't be able to have the BMT done, seeing how much pain he has been in, and knowing that the Bone Marrow Transplant could at the very least give him a better quality of life we felt like it was the best option for Anton to move forward with the transplant. We are in close contact with several people who have had the transplant done and we are very hopeful for what the future will hold for Anton post transplant. Dr. Tolar is an amazing doctor and he truly cares about people with EB and their families and I know that he won't stop fighting for a cure. We are thankful that God has allowed us to move forward with the Bone Marrow Transplant. We are praying for God's will in all of this and praying that God will be glorified through Anton's life. For from him and through him and to him are all things. To him be glory forever. Amen. Romans 11:36 #cureeb #irefuseeb #bmt via Help Anton November 26, 2014 at 05:16PM


Cherbos said...

Would it be possible for you to provide an address for us to send something to Anton while he undergoes the transplant? Suggestions would be great too thanks! Sending prayers your way.

Karen said...

We have been praying for Anton off and on since I first saw his story. We were so glad when you became his family!

I will make an effort to pray more regularly for him as you pursue this option.