I am so so deeply sorry to hear about the loss of your gorgeous, perfect, little boy Joshua. I know there are no words I can say to make you feel even remotely better as the loss of Joshua has most certainly left a void that will never be filled. My heart goes out to you both. My little boy James is currently 5 and he has Duchenne. I take for granted that he will be with us for still many years to come, but life is funny and the news of Joshua's passing has made me aware that nothing is certain. I look at the photos of your little boy and my heart just breaks, he was such a perfect little specimen of a boy and this world is a lonelier place without him. I am going to give my son a very very big hug tonight and will most likely have trouble letting go of him. I wish you were able to do the same.
Once again, I am so sorry for your loss and I hope that a cure will soon come about so that more families won't have to experience the heartbreaking loss of their child. This life is too cruel as it is.
Sharyn Thompson xxx
Coach for a Cure was fun, enlightening, and now I've been close enough to football to last me until next year, Buffalo , I heard had the game stopped and never resumed...Nice WNY weather we have.
We started Sam on hgh on July 6. We have not seen any growth or change to speak of yet, but we've been told it may take up to 3 months to notice growth. We have several friends boys on it and some of them have seen good growth. It is a nightly shot. Sam is not fond of it, but tolerates it because he wants to grow. The shots are easy to give. We are having a little trouble getting insurance to cover it, but other people have not. I know that is not much info to go on. Check back with us later and we'll see if we have anything new to add!
Thank you for your message. We see Dr. Wong too. She is so wonderful! Josh sounds like a fun guy. We have several friends that have adopted children from Russia and our kids went to a preschool that taught cultures from around the world. They performed a "Russian" play every year and learned many Russian words. The director has gone to visit Russian orphanages many times and helped them start the Babuska program.
There are several things that our family does for PPMD. We try to reach out to families with a new diagnosis and make sure that they are getting the information they need as well as emotional support. We also try to educate and inform our family, friends, and community. Sam's school is very supportive and we hold an event each year called Sam's Family Fun Day. The goal for Sam's Day is to raise awareness and raise funds to benefit PPMD. We raised about $140K this year. Sam's Day is a fun, family event and a good opportunity for families to learn about DMD, ask questions, meet other DMD boys and their families, and make donations. Our family also participates in Run for Our Sons Marathons. My husband, John, and daughter, Abbie, will be running marathons next weekend at Disney. Abbie's website is parentprojectmd.org/goto/abbie.killian. You can also access John's website from her page under Sam's Team to see what he has to say. Many families go to Disney for the marathons and PPMD hosts a dinner and victory party. This is a great way to meet other DMD families and we now have friends from all over the country as well as Canada. It is also a good way to stay connected to our friends and for Sam to have contact with other DMD boys. In fact, we are meeting the Hiatt's there this week! If running is not your thing - you can participate as a Spirit Runner and raise funds on line without having to run. We attend the PPMD conference every summer. Again, a good place to meet other people and get super information. This is actuallly where we met Dr. Wong several years ago. And lastly, John (and our 2 oldest kids) attend the PPMD Legislative Conference every year in Washington, D.C. This has been a very empowering and educational experience for our family. I would encourage you to attend this year if you can. PPMD is wanting as may people to help as possible. This is one event where there is power in numbers! This year PPMD is going to start a new program called FACES. The idea being to unite families by state (or areas in Texas because it is so BIG!) and be a supportive group and resource for one another. I think this will be a beneficial program and a way for more people to get involved.
Are you looking for ways to get involved? Are you new to PPMD?
Hi Shawn and Jessica,
It was so nice to meet all of you in Cincinnati, it's a relief to be able to be with other families. Hope you had a safe trip home and we look forward to keeping in touch with you. Merry Christmas.