August 2011 Blog Posts (2)

New to LAL Solace

All,

We are the parents of a CESD patient. Our oldest daughter, Maureen, was diagnosed with CESD when she was 5 years old. She is now 14 and we are glad to hear about information being shared on this website. We knew about the disease and it's complications from our daughters specialist at Childrens Hospital in Philadelphia but now can share with others in a similar situation. We also have 3 other daughters that are unaffected by the disease (they don't have it nor do they have the…

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Added by Shawn Agnew on August 19, 2011 at 5:17pm — 3 Comments

my son

im jessica  i lost my son in 2009 to wolmans at 4months and 20 days.. we didnt fine out he was sick till he was 2months it suck to lose a baby at 18 i didnt want that to help to me or my family is all i had no baby daddy, when my son got worse i didnt know what to do i was always in the hospital wit me till the day he passed i held him in my arms he passed in them till this day i still see him dieing in my arms..

Added by jessica nelson on August 9, 2011 at 5:00pm — 2 Comments

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