Hello,- we are hosting an event called "A Night to Shine", on Thursday, October 13th at the Hauptman Woodward Inst, in Buffalo. We would like to invite you and your family to attend. We are reaching out to all the families in the area in order to raise awareness in our community. Our website is http://www.suneelslight.org/, and if you are interested, please contact me.
Hi Laurie, Hope all is good with you. Just writing to say hello & to pass on some information that I think would be helpful to you as it has been for me. There are a couple of groups here in the Buffalo area that I would like to suggest to you. The Independence Foundation ~ www.theindependencefoundation.org
Suneel's Light Foundation ~ www.suneelslight.orgThese both may be found on Facebook as well. God Bless, Suzanne :)
I know I have not spoken to you in awhile & I hope all is well. I wanted to let you know that I agree with the Kuller family. I went to see Dr. Wong two weeks ago & wished I had gone sooner. If you are thinking about whether to see her or not just go, she is worth every minute. I have decided not to go back to Rochester. I am seeing Dr. Wong once a year & going to try to do follow up visits here in Buffalo. I also wanted to let you know I volunteer with Gliding Stars Adaptive Ice Skating Program. We teach Children & Adults with mental & physical challenges how to ice skate & we have a show every year at the Amherst Pepsi Center. Elizabeth O'Donnell, founder & President has two rinks Hamburg Ice Arena & Hide Park. My son Francis who has DMD & Autism is apart of the Program, we skate at the Hamburg Ice Arena. I feel it has been very beneficial to him. Just wanted to pass this information onto you. The season starts in October. If you would like more information on Gliding Stars go to glidingstars.org or just ask me. God Bless, Suzanne
We have been going to Dr. Wong since 3/06. We love it. I have never had the level of confidence anywhere else. Just over the last 3 years I have seen the # of boys jump up dramatically. Everyone wants to see her!
By the way - we order from Masters (Blake has been on Deflaz. for 5 1/2 years) and have never once had a problem.
Yes, Calcort is the same thing. Most families order their deflazacort from www.mastersmarketing.com The company that you order it from may require you to provide them with the presription from the doctor
Yes we will be there tomorrow coming in later that evening. We are staying at the Radisson. I hope we can meet before we leave. We don't have any appts on Wednesday so we may go to the Aquarium or the Children's Museum. Good luck!
My name is Jessica (Shawn's wife). Shawn set the account up for me. I would be very interested in talking with you. You can give me a call ,our home # is 283-0247. I am able to discuss everything much better that way. If you would prefer to e mail, just write me back. We have seen ALOT of specialist in this area.
I look forward to speaking with you. I have had a great deal of difficulty finding anyone in this area with a son around Josh's age (3 years, he was diagnosed 12/7/07).
We see a pulmonary specialist, Dr. Votter, the MDA sponsored clinical doctor (neurologist) , Dr. Rabi Tawill, a cardiologist (adult) and an endocrinologist, Dr. Orlowski. all located at the Strong Childrens hospital. Or orthopedist is DOA so we are looking again, hard to find one that knows squat about DMD. Our son in on a plethora of medications; I don't advise, reccomend, etc. any of them until you see your doctor(s); This is a real problem in this DMD community; Each parent or group gives their child some supplement cocktail of 2 to 10 supplements and some prescription medications and they don't always play well in the body. Example lisinopril for the heart and CoQ10 at almost any dose, bat things can happen to kidneys and heard, without showing symptoms. Oops, yeah we found that out the hard way.
Anyway, get an appointment with Dr. Tawill and he will get you going, he's honest, a tad biased, but he has the best interests of his patients as a first priority and does listen.
HI Laurie, We found out this year that both of our boys are DMD.
I want to tell you to hang in there. From a momma to a momma, please keep faith and have lots of hope that you will get through this. You and you wonderufl family will get through.
As the time passes, the pain does subside a little, enough to make it copable. Good luck my dear. My heart is with you and Ben.