Combining all of our fundraising efforts in 2009 for the local MDA office, Coach to Cure MD at the Winking Lizard, Coach to Cure MD at Holy Name High School, and Run for Our Sons marathon in NYC we have raised approximately $16,300 towards a treatment and cure for all boys living with DMD. We are simply overwhelmed by everyone's generosity and willingness to Rally4RJ.
Several common questions are frequently asked of us so we thought we would briefly address them on the website.
How are we doing as a family?
We are coping the only way we know how and that is by living our lives and truly appreciating each day we have together. We are happy and enjoy each other's company. We love to be together, act silly, and laugh. We pick each other up when we are down and then continue on our journey. RJ's smiling face keeps us going and his funny antics make us laugh each and every day. It certainly is not easy knowing the aggressive progression that DMD will have on RJ's entire body over the next several years. This disease is unbearable taken in its entirety. We balance hope and faith with the reality of the disease. We are preparing ourselves through knowledge, support, and the commitment to finding a cure.
Do we like to talk about the diagnosis?
We welcome open conversation about Duchenne Muscular Dystrophy and our family. In fact, we prefer to talk about our life than live in denial. Denial is exhausting for us and does not help our family move forward for the life ahead of us. Asking how RJ is doing makes us feel better and does not make us think any more about the situation. We think about it all the time anyway. Although extremely difficult at times, we are in acceptance of RJ's diagnosis. Acceptance has given us the strength we need to focus our energy on living in the present.
How is RJ doing physically?
All things considered, RJ is doing quite well. Honestly, from afar a stranger would not know that RJ has Duchenne Muscular Dystrophy. However, once you see him perform any physical activity compared to his peers then you start to see the differences. It becomes quite apparent that he is not physically strong. Some activities are difficult for RJ like throwing or catching a ball, swimming, walking up the stairs, and riding a scooter or bike. Other simple tasks for a six year old such as jumping rope, any kind of balancing activity, or running fast are impossible for RJ to perform. RJ is very aware that he is different from the other kids and only says, "I wish they would just wait for me because I cannot go so fast!" It is hard for RJ to relax and not get so frustrated and equally impossible for other kids to understand (at six years of age) to slow down. We live in a fast paced physical world. RJ loves to be in a crowd making other kids laugh. One day towards the beginning of the school year, I was worried that recess was not going well for RJ (football games seem to be the popular choice among boys) so I stopped by to take a look and I couldn't find RJ anywhere. My first though was that he was off alone somewhere when I saw a group of girls in a circle pointing and giggling and wouldn't you know, RJ was in the middle of the circle with a stick and on the stick was a moth that he was proudly showing to anyone who was interested! He is paving his own path and for now he is going to be alright!
How is RJ doing in school?
We cannot be any happier with Saint Bernadette School. They have embraced RJ and are keeping him close in their hearts and prayers. Extra special thanks to his first grade teacher, Mrs. Chinchar who in a very short time has transformed RJ into a boy who loves to go to school each and every day! RJ may not be convinced about the power of her "magic learning sprinkles" but we know that RJ is blessed to be in her classroom. He works very hard to learn and remember everything necessary to do well in the first grade. School is challenging for RJ so he has several tutors supporting him, but so far he is doing quite well. We are very proud of his enthusiasm at school and his academic progress! Thank you Mrs. Chinchar!