The story: Dominik was diagnosed with Von Willebrand Disease in August of 2007. This is a bleeding disorder, a bit like hemophelia. Von Willebrand factor is a part of your blood. It's main job is to help your blood to clot. Dominik's Von Willebrand factor is very low. What this means is that once Dominik starts bleeding it is hard to get it to stop. The good news is that we now know what it is and there is medication that Dominik can be given by IV when he starts bleeding (some of you remember his crazy bloody noses!!) and it will help release the Von Willebrand factor that Dominik has stored and it will help him to stop bleeding. We appreciate all plasma donors because this medication couln't be made without plasma! The good news is that the he has type 1 which is the mildest version. Dominik used to have severe bloody noses and even had to go the ER to have his nose packed and cauterized before..It took a long time before a doctor suggested he be tested for a bleeding disorder. The rest of the story: Dom has also been seen at Duke University by Dr. Rebecca Buckley to find out if he had an immune deficiency and determine what it was. The test that he had performed is only done at a few places in the whole world! There is only one Dr. that reads the test so it takes a long time to get the results. We saw many immunologists that told us that Dominik didn't have an immune deficiency...but you know that mother's instinct thing.. I knew that something wasn't right...so we persisted until we finally found the doctor that was willing to look at everything and figure it out. A year later when the test finally came back and 4 years after he began with his illnesses we finally got some answers. Dominik's immune deficiency is a b-cell and a t-cell immune deficiency. Dr. Buckley said she hasn't seen anyone respond the way that he did...Dom has enough IGG but only 1% of his IGG actually works..he is now being treated with a weekly subQ infusion of immunoglobulins called hizentra which is basically a human blood product that will replace antibodies that his body cannot make. He has to have this weekly as that is how long it will stay in his system. This medication can also only be made from human plasma.in July 2013 he was diagnosed with POTS. This is a disease where his autonomic system doesn't function correctly. Your autonomic system controls things like heart rate, blood pressure, breathing etc. It took 21/2 months for us to get a diagnosis. Basically when Dom is in verticle position his heart rate goes very high and his blood pressure drops. Since his symptoms began he spends almost all of his days in bed or in his wheelchair. The doctors tell us that since he developed POTS at such a young age their is a good chance he will outgrow it by early adulthood. We arempraying this is the case.
Dominik also has problems with his blood counts. He had a couple of bone marrow biopsies which show that his white cells do not function properly. He is neutropenic periodically.
Dom is an amazing boy and we thank God everyday for choosing us to be his parents. Even though it has not always been easy..he is such a strong little boy. He has NEVER asked "why me?". It always come back to the fact that God has plans and we are not in control. I have learned so much from Dominik..and my faith took on an entirely different dimension the day he was born. Thank God everyday for all of your blessings!!
Dominik is on full time hospital homebound. (He had missed over 60 days of school between Aug 2007 and Jan 2008 and has been in hospital homebound ever since) This means that his teacher comes to the house for school. He's had the same teacher since starting homebound and she is amazing! He has amazing doctors and we are very grateful for all the time they spend helping Dom. Dominik is a black belt in tae kwon do (before he was struck with POTS). And he also speaks at plasma centers thanking donors that help him stay alive. He is an amazing kid! Thanks for taking time to read about Dom. Be sure to leave Dominik a message.!