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Christine Marie Pierce Female New Tripoli, PA United States: Favorite

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POSITIVE results with a new therapy

Started Dec 14, 2013 0 Replies 0 Favorites

My son Lance has DMD. For the last year we have been doing an experimental therapy. Lance is the ONLY person in the country - probably the world - to be trying this therapy. We are having what I…Continue

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Name(s) of child(ren)/individual(s) with Duchenne:: Lance

Age(s) of child(ren)/individual(s) with Duchenne:: 7-12

City:: New Tripoli, Pa

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At 10:02am on July 12, 2014, Regina said…: Thanks for the info! You mentioned "when he is in treatment" what does that mean? Do you only have to go there for certain blocks of time or do you have to go continuously? How long is each session, and do the people at Hope Institute have any medical theory as to why they think it is helping? Jordan is 12 1/2 and is still walking, but fairly limitedly. I do think that if we could stabilize him, medicine in the pipeline could help him down the road. That's why we are considering more novel or unOrthodox treatments right now.

At 9:11am on January 11, 2010, Victor Tavarez said…: Hello Christine. It's a pleasure to meet you and your beautiful family. I'm sorry to hear about your son Lance. I truly understand how you feel. My son Victor Jr, is going on twelve this year. He will be needing a wheelchair soon. He's been getting extremely tired and it's been tough lately for him to get through his school day. Yes, we should definitely see if we can meet up some time and get the boys together. I also have a 10 year old daughter and her name is Kimberly. She would love to meet your daughter. My email address is vtavarez1@hotmail.com. I will email you with my number and please feel free to call anytime. Take care and may GOD bless your family.

At 10:20am on January 9, 2010, Christine Marie Pierce said…: Lance was diagnosed when he was 7. We go see Dr. Giordano at Hershey medical center. We are about 15 miles North of Allentown Pa if that helps. Lance is doing great. He is a sweet boy and gentle natured. :-) He is also pretty tough with all he has to deal with. I have been a real estate agent since 2000, but now I have my teaching certification and I am currently looking for a full time teaching position. I am certified for elementary, middle school science, English 7-12, and Family & Consumer Science..and get this... I can't seem to find a job! I will though, and I can't wait! I just LOVE teaching. God Bless you Joyce, for working in ped. ICU. What an emotionally draining job I would think. I think my husband Marshall and I will be going to Washington DC in February. Anyone else? ;-)

At 9:19pm on January 8, 2010, Joyce Carpenter said…: Christine,
Thanks for replyingtomy note. Yes, we are so lucky and hope for a cure for our boys. How is your son doing? Is he on prednisone? What age was he diagnosed? What do you do for a living? I am a registered nurse and work in a pediatric intensiv e care unit at our children's hospital and have for 30 years now.
Joyce

At 7:53pm on December 9, 2009, Jessica Florkowski said…: Hi Christine! My name is Jessica Florkowski. I live in Kempton and was wondering if you want to get together sometime? I have two boys. Kyle is 7 and does not have DMD. Patrick is six and has DMD. Patrick was diagnosed when he was two. Please call me if you want to talk or get together. 610-683-5967

At 9:27am on December 8, 2009, Jacobs Mommom said…: Hi Christine:

My name is Donna Doyle and I'm the MomMom of a 9 year old grandson, Jacob, with DMD.
I live in Doylestown, PA and they life in Lansdale, PA. I will have to do a mapquest to see where you are in PA. Please join our PA Families Group on the "Groups" page.