I am a very compassionate person who loves her family very much. I work full-time and try to manage the appriopate therapies for my son. I'm very easy to talk to and try to help if possible. I love God and am grateful for my son, Sean. I would love to meet people with a son like mine and share thoughts and maybe support each other thru the hard times.
About my family:
I have been married to my husband for 17 years and we have our son, Sean, and a son from my husband's previous relationship, Adam. We all try to help out and make sure the Sean knows that he is loved. We are a close family!
Name(s) of child(ren)/individual(s) with Duchenne:
My name is Margarita, I live in Ukraine, Kirovograd. I have a son, who is ill with Duchenne. My name is Margarita, I live in Ukraine, Kirovograd. I have a son, who is ill with Duchenne. He is now 10 years old. Doctors diagnosed the illness at the age of 6.5. In Ukraine, no onetreats such children. Therefore, we are forced to travel to Israel each year toseea neurologist. There we learned howto swim in the pool, ride a horse,dospecial exercises (such asstretching)every day. For 2 years we have been able to stop the disease. But last 2 years my son fells woster than it was early. Iwould liketo communicate withtheAmerican parents and doctors whoprobablyknow more about new medicinesor methods for treating this condition. My email email@example.com. If you have a free time write me on my email I wiil wait.
My name is Marharita. I am from Ukraine. I have a son with DMD. He is 10. I write lerttes to people from different country. I would like how do they live with this illness. My son have goes to school on the fourth grade . But ukrainians doctors haven`t known how help us. So, just know more and will have community. If will have a impossible so write me about you. My email firstname.lastname@example.org.
Hi Stacy, your family is beautiful! You will find so much helpful information and make so many friends through PPMD - welcome! Thanks for adding me as a friend to your page and any time you want to talk or need some support, let me know - we are all here for eachother. DMD does have many challenges that is for sure!! I have to run now...my son has a neurology appointment this morning. Take care and keep in touch!!!
I still have my crying jags, I guess it is part of being a mother and wanting the very best for your child. If you ever have a question or just want to "vent' please write me! I think the biggest thing to learn is that you are not alone! Feelings of guilt, rage, lost and confused are apart of what all of us go through. I feel so very, very lucky my son has made it so far, and of course, he is a wonderful human being! Thanks for writing
dezi is 11 will be 12 in november. he is the seven boy in our family to have DMD but that is dating back to 1829. dezi is still walking and has been on deflazacort for 2 years now with no side effects. he was diagnosied when he was 7. dezi's gate is a little off but other wise normal. he uses his wheelchair just for long distances. he does most things for himself he is very independant.
Hi Stacy - Thank you for writing, and welcome aboard. What a beautiful family you have! Sean looks like he's got eyelashes to die to for! Quinton does too--I don't know where he got them.
Yes, we try not to lose sight of how blessed we are. I just want so much for Quinton to feel comfortable about who he is and how he fits in to this world, and I don't know how to make that better for him. When you have a chance to write back, maybe you can let me know how you feel Sean is doing and what you think benefits him the most.