My name is Julie Hathaway and I am an educator in Greenville, S.C. I enjoy scrapbooking, boating, playing the clarinet, spending time with my wonderful family, teaching and church activities. We are very proactive in raising awareness and finding a cure for DMD!
About my family:
I am the proud mother of 3 beautiful children and the wife of a wonderful husband. My children were all adopted and are our little gifts from God. Amber is 13, Brandon is 8 and Ethan is 3. Needless to say, it's very exciting, interesting and busy at our house!
Name(s) of child(ren)/individual(s) with Duchenne:
Brandon Lee Hathaway
Age(s) of child(ren)/individual(s) with Duchenne:
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Hi Julie, sorry for not being active here but I don't know why I cannot open the community page from my computer. So I have to use another computer. PLEASE come and see us, let's talk. You can also stay with us although I know you may be here already. Here is my phone number 513-765-9416. Here is my address: 6576 Carriage Hill Ln, Madeira OH (Exit 11/12 in I-71). Where are you staying?
My email is email@example.com. I would enjoy the article. That's great that your son is in cub scouts. We were not able to make the commitment. We go back to Cinci in July. We picked the summer months so we can skip out on the snow..just missed the blizzard last year by one day.
My son is doing well. We were in Cinci in July and go to Pittsburgh this Friday for a check up. I'm lucky he continues to do well in school except for a few behavior issues this past month. not sure why. How is Brandon? Anxious, Excited about exon skipping and all the promising news..just need it to get here FAST!!!!
Thank you so much. I work for Dr. Jude Samulski who is a leader in the research field of DMD. We are in the process of partnering with PPMD and the FACES program. We are excited about the research going on in this field.
If you want to see more on the work Dr. Samulski is doing go to genetherapy.unc.edu. Take care.
I wont be able to go tot he conf. This is the website. This is all I know so far. Also check out Charleys fund website. Charley as the same deletion and his parents have raised millions of $$.
Hey Julie! I am thinking my husband is going to go with me to the conference....it's taken a while to get much of an answer from him....sorry for being so slow. Have you found any other people who are going? We'd definitely be up for going to the sessions together and look forward to seeing you there! Good luck with your fundraiser at the Pizza Inn! That's sounds like a lot of fun! Hope all is well! Hugs to Brandon.
The "Nada Chair" is actually something created originally for sporting events, then office situations, and such (http://www.nadachair.com). It is basically a back pad and adjustable straps that come to knees on adults. These have been recommended for "long leg stretching" efforts, enhanced with simultaneous usage of AFOs. I am in the process of determining if insurance will cover these. They should, but may require written prescription from Doctor Wong or her team.
Things have been hectic with this huge initial push and I am just now getting around to responding to messages from other concerned DMD parents.
It sounds like you are in pretty much the same place as we are currently. Eric and I just got back from our visit to Cincinnati Children's. Most of what was received there was fairly well expected from research done to that point, but I think the experienced, total experienced care was worth the trip! We are getting the AFOs and Nada Chair for stretching, as well as the TB test necessary to begin Deflazacort treatment. We should be good to start that when the Deflazacort arrives towards the end of next week.
It helped that he could watch a movie. The first one was just a little stressful but the second one was easier. Would love to try and meet.
Dale just loves Legos. He can play on the floor for hours with his legos. He has such a great imagination.