I never know what to say here...we live in Germany working with the military. I find some of the MD challenges overwhelming here, but I also find a great many other opportunities to explore that we wouldn't have in the states. I work full time and would not if it wasn't for the insurance benefits.
About my family:
Small family - my husband and son who is an almost exact replica of his father!
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
Overseas but consider TX home right now
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Glad you found me here. Feel fee to friend me on fb, as I am that a bit more than PPMD. But do check PPMD once-2x week. My husband & I were different people 2 yrs ago, DMd has changed us, hard to believe that but many aspects are more positive. We are trying to be as involved as possible. We are raising funds for Levi's trust & for PPMD research.
We attend the annual PPMD conference and advocate in DC; if at all possible, when back int eh states you should try to make conference. It's a great event. I really like CHOP as it is 1 1/2 hrs from home. People rave about Cincinnati Childrens & Dr. Wong. I have met her & she is great too. I am partial to Dr. Finkel at CHOP. I look forward to communicating more w/ you. Since your dx im sure things are very hard but I promise you, it does get a little easier... never easy.. but the pain isn't always as intense. Try to live for each day & know that better things are happening for our boys as we speak ( or text) lol - That's how I get thru each & every day. I try hard not to dwell on the DMD of the past & focus on good things for the future. xoxox perlita
Hi Katherine - Our son is age 8 yrs 4 months. There is a tool kit on PPMD the England website. There should be a link to that website in this one. There is a smaller protein in the brain that is effected. I tell you this not to scare you but to help you realize that there is a link so that you can realize that the behavior is hooked to the DMD. There are ways to approach the delays...and generally the behavior or cognitive ways are there regardless of the IQ. Other neurological things like ADD - attention deficit disorder or sometimes autism are possible. The tool kit will help you with approaches and understand what's going on. Our son is in an academically based special ed class - they do the same work only less kids in class and more support. I don't know about what education is available but here in the States, there has to be help for our boys b/c of the Disability Law. Will is asking for breakfast so let me know some more specific questions and I will try and answer them. Also google Dr. Victoria Hinton out of Columbia University - she has studied and continues to study how DMD boys learn. Best - Char Burke p.s. we do to Seattle Childrens Dr. Apkon but also Cincinnati Children's Dr. Brenda Wong. CHOP is good too....
Hi Katherine - Please let me know your son's age. I can try and share what we have noticed in the way of cognitive or other delays. I do know of another family in Tx that has the same area as us. However, one warning - I have seen 2 boys with same mutation and b/c of genetics, they have been different. But, still - I can share gladly. Also, let me know where you are too in the US? Char