Hi Lisa. Im sorry so long to respond. Please come over to facebook @ LIVING WITH DUCHENNES MUSCULAR DYSTROPHY. Inexperienced staff at MDA, and a doctor that has no gameplan has led me to try to help others. I have been left to fend for myself, and as a single dad dealing with extreme behavioral issues, I believe I have knowledge that will benefit most families. I have dealt with both Prednisone and Deflazacort and you will be amazed at the differences...Thanks for listening and please come by. Hugs for your child...I love all these little hero's
Yes, I do remember you. Thanks for reaching out. You have a beautiful family. How are you doing? How is Jonathan doing? Is he going to MDA camp this summer? What types of activities does he like to do? So glad that you have the support of sooo many wonderful people....I think that is sooo important. If you ever need to talk, please don't hesitate to call me ( I think you have my number).
Glad to connect with you here. Wish we connected under different circumstances though, but it is what it is. Took quite a while for the gray cloud of MD to move from atop my head, but it has and I feel strong, willing and completely able to deal with this. I do not know what happened to me but I went from crying every day to now just wanting to have Liam do all me can now regardless of the disease. Liam is 10.5 and runs, jumps, swims and rides horses. Liam is showing promise in dressage and while his doctor and PT revently said Liam should only be walkin gon the horse, he does it all and I certainly would not take that away from him. He would be crushed if I said he could only walk. So our decision to allow him to do all he could was very easy. Yes, we all wish to protect our kids, but we weigh the two - on eone side we have a miserable kid now who is completely able and totally wants to go as far as he can on a horse, or on the other hand, we can have a kid who is not allowed to de what he loves. If us holding back gives him a few extra years, so what. If riding to his potential cuts a few years, fine - Liam;s happiness is of the utmost important thing to us. PERIOD. Although Liam is an exception to the world of DMD - it goes to show just how complex this disease really is. Liam was diagnosed at 8 and has deletions of 48, 49 & 50 - so we are obviously awaiting the exon skipping trial soon to come about.
Please tell me more about Jonathan as I am eager to hear all about him.
Take care and I'm very glad to have you here.
Hi Lisa, Thanks for the friend add. I'm sorry about Jonathan's recent diagnosis - it's a difficult thing to deal with. Your family is beautiful and will see you through all the hard times...and they will be there for the great times too. There are so many great times - even with the horrible cloud of Duchenne always hanging over our heads!!! It's been nine years for us, and we've been through many, many challenges and changes, but Nicholas has always managed to keep smiling and keep us smiling. I'm sure Jonathan will do the same for you. Take care!!!
Hi Lisa, Thanks for adding me as a friend and I hope that Jonathan is doing well. We found out about our son's diagnosis almost 5 years ago. This is such a difficult journey...I cried for 2 years but I'm finally able to laugh again and appreciate everything that we have been blessed with. Jordan is a freshman in high school and is still walking. We are extremely encouraged by results of recent clinical trials and believe that effective treatments and a cure will be found very soon. Let me know if I can help you in any way.
Hello, I am still waiting on the results of Christian's genetic test. I am not a very patient person and this waiting stuff is hard. Christian is my 6 year old adopted son that came to my home as a foster child when he was 3. That was in December of 2006, I noticed right away he was not going up the steps as fast or steady as his 2 year old sister. Then there was the constant falling for no apparent reason...not to mention the very muscular calves. The doctors told us 5 times over the course of 2 &1/2 years that he was fine, nothing remarkable. He lacked confidence considering his rough early childhood with his birth mom...but I knew different and just would not let it drop. I finally convinced a doctor to order physical therapy for him because I thought he needed to build and strengthen his muscles. Simple tasks such as getting into the car and shutting the door were increasingly becoming a struggle. He refuses now to carry anything in his hands while he climbs the stairs because he needs both hands on the rail. I just never thought it wouldbe DMD. I have spent countless hours the last 3 weeks scouring the internet and pouring myself into research. I am glad I found this site, Almost no one in Battle Creek MI has heard of DMD.
Hey Lisa, I got your message on Facebook. My son was recently diagnosed and is 7 as well. Connecting with other parents is a blessing and they definitely understand where you are. I don't know about you but this year has been like a roller coaster and I still have bad days. I would love to become friends.