Shawn Agnew
  • Male
  • Haddonfield, NJ
  • United States
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Shawn Agnew's Friends

  • Karen deJong
 

Shawn Agnew's Page

Latest Activity

Shawn Agnew and Karen deJong are now friends
Aug 24, 2011
Karen deJong left a comment for Shawn Agnew
"Welcome and thankyou for joining! It is encouraging to hear about other people that have lived with CESD."
Aug 24, 2011
Brett Billmeyer commented on Shawn Agnew's blog post New to LAL Solace
"Wow, GREAT to hear she is doing so well! Look forward to seeing your family picture! It was very evident that something was very wrong with Gage...however it took us 3 months for a diagnosis as well. Hopefully with awareness that diagnosis time will…"
Aug 21, 2011
Shawn Agnew commented on Shawn Agnew's blog post New to LAL Solace
"Thank you for your response. I'm very sorry to read that your son had passed from Wolman's Disease. We learned a lot after Maureen was diagnosed. It was by chance that our family pediatrician suspected something was wrong with Maureen. We…"
Aug 20, 2011
Brett Billmeyer commented on Shawn Agnew's blog post New to LAL Solace
"Welcome! And thank you so much for sharing your story. My son Gage passed away from Wolman's Disease in 2009. Between the lack of good information and the lack of a support group, we felt so alone. Our hope is that this community can raise…"
Aug 20, 2011
Shawn Agnew posted a blog post

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 mutated…See More
Aug 20, 2011
Shawn Agnew is now a member of LAL Solace Patient Community
Aug 19, 2011

Profile Information

What brings you to LAL Solace?
All
Do you or someone you know have a LAL Deficiciency Disease?
Yes
If yes, who is effected by LAL Deficiency?
Child

Shawn Agnew's Blog

New to LAL Solace

Posted on August 19, 2011 at 5:17pm 3 Comments

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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Comment Wall (1 comment)

At 2:29pm on August 24, 2011, Karen deJong said…
Welcome and thankyou for joining! It is encouraging to hear about other people that have lived with CESD.

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