Chronic Health Conditions Discussion and Support

hotrod0808

(323 posts)

10. The biggest problem

Fri Mar 21, 2014, 12:20 PM

Mar 2014

with her and all sufferers of this disease is that it kills most of the kids before they are 18 months old. There just isnt much research, except for a few clinics here in the states and in Europe.It's not a sexy disease for big places to study. I challenge my peers on this forum to spread the word somehow about the warriors of this disease who still march on to get them cured before they suffer Sofia's fate. For MJ in Columbus, OH; Cashel and Allie in Las Vegas; for Mateo and Gwendolyn in California; and especially for Connor in Michigan, who my fiancee went to visit the day Sofia left us. Please, if you can spare some sympathy for these kids and young adults who fight this battle every day, share Sofia's story and theirs, too.

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March 20, 2014 my life changed forever [View all] hotrod0808 Mar 2014 OP

I'm sorry to hear about your loss. TexasTowelie Mar 2014 #1

I hope you can treasure the moments you had with her. CJCRANE Mar 2014 #2

There is nothing you did that caused this Warpy Mar 2014 #3

I can only imagine your pain lillypaddle Mar 2014 #4

I am sorry to hear that. Half-Century Man Mar 2014 #5

(((((((hotrod0808))))))) May you find comfort in the beautiful memories japple Mar 2014 #6

tears, tears, tears... Stellar Mar 2014 #7

No words, hotrod, brer cat Mar 2014 #8

I'm so sorry for your loss. A Little Weird Mar 2014 #9

The biggest problem hotrod0808 Mar 2014 #10

I know "I'm sorry" is inadequate Lifelong Protester Mar 2014 #11

I have no words hotrod0808. I am so sorry. Squinch Mar 2014 #12

Oh my God I am so sorry. I cannot imagine. Please accept Maraya1969 Mar 2014 #13

I can't imagine the depths of your sorrow, and my pnwest Mar 2014 #14

I am so sorry you have lost your precious Sophia. nt No Vested Interest Mar 2014 #15

as a mother of a child who is medicallyy fragile, deek Mar 2014 #16

This message was self-deleted by its author hotrod0808 Mar 2014 #17

Her obituary. I miss her already, and will miss her forever hotrod0808 Mar 2014 #18

My deepest sympathy Worried senior Mar 2014 #19

Today hotrod0808 Mar 2014 #20