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Just wanted to leave you a quick comment. The groups are great. Really impressive the amount of work you have done for your son. I am now living only to find ways to help with limited resources. I have had a fall out with Loma Linda for obvious reasons. They misdiagnosed Matt in 2005 and now I go to a clinic that has absolutely no services. I am also not in a talking relationship with one of main woman over at the OC MDA office. While I am the common denominator, it is simply my inability to allow my son to be a number. If someone can look at a child that is being ripped apart and not feel any compassion, then I'm not going to get along with them. I have left every appt at Loma Linda feeling worse that when I arrived. Why isn't he suggesting supplements? Why didn't he suggest meds for his stomach issues? My ex wifes son is 13 and in two years has never even had an EKG?? I tried to get counseling and they send in a very nice girl, but in her early 20's and busy in college, so unable to connect with her... I can't believe that families get left in these situations, but I am seeing it all the time when I meet them...Hope we can talk and hugs to your boy...I hurt for every single one of these kids
Was hoping you knew a little about the Children's Hospitals in L.A. and O.C. I am in contact with OC but have heard good things about L.A. Im easy to reach at facebook...Living with duchennes muscular dystrophy or Mark Perrotte..Take Care
We are all doing good, how about you and yours? Is Micah enjoying school? Are you still doing the long journey to the OC? Thanks for checking in on us. Take care,
Mary
Yes, I did write a letter seeking coverage for out of state services. Please e-mail me at brian@parentprojectmd.org and I will look for the letter and send you a copy Wednesday or Thursday.
Brian
Thankyou so much for helping me and I am so glad I found you guys again That wife of yours is surely an angel,she has helped me so much.
I hope all is well
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