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Fri Mar 21, 2014, 04:07 AM

March 20, 2014 my life changed forever

My daughter, Sofia Maxine Scott, died from the disease Spinal Muscular Atrophy (SMA) Type 1. She was 2 years, 8 months old. This disease is genetic, with no known cure. Her mother gave up everything to stay by her side when she first took ill, and I gave everything I could to her after my shifts at a factory. She loved Mickey Mouse, Team Umizoomi, and The Bubble Guppies. She loved her mommy, daddy, and big sister.

This disease is chronic, progressive, and fatal. There is no cure. No matter how much research there is, it wasn't enough.

I can't make sense of this at all. The disease is genetic, and the doctors had prepared us for her early death since she was diagnosed at 5 months of age. Yet, there is just something so wrong about having to bury your toddler.

I hate SMA. I hate death. I hate life. I hate myself for being a daddy who couldn't fix her.

Fuck this planet.

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Arrow 20 replies Author Time Post
Reply March 20, 2014 my life changed forever (Original post)
hotrod0808 Mar 2014 OP
TexasTowelie Mar 2014 #1
CJCRANE Mar 2014 #2
Warpy Mar 2014 #3
lillypaddle Mar 2014 #4
Half-Century Man Mar 2014 #5
japple Mar 2014 #6
Stellar Mar 2014 #7
brer cat Mar 2014 #8
A Little Weird Mar 2014 #9
hotrod0808 Mar 2014 #10
Lifelong Protester Mar 2014 #11
Squinch Mar 2014 #12
Maraya1969 Mar 2014 #13
pnwest Mar 2014 #14
No Vested Interest Mar 2014 #15
deek Mar 2014 #16
hotrod0808 Mar 2014 #17
hotrod0808 Mar 2014 #18
Worried senior Mar 2014 #19
hotrod0808 Mar 2014 #20

Response to hotrod0808 (Original post)

Fri Mar 21, 2014, 04:14 AM

1. I'm sorry to hear about your loss.

It's difficult enough when our loved ones pass away, but when you are a parent and the child is as young as your daughter it is truly devastating and unfair. My prayers tonight will include Sofia and for researchers to find a cure for SMA.

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Response to hotrod0808 (Original post)

Fri Mar 21, 2014, 05:06 AM

2. I hope you can treasure the moments you had with her.

You did everything you could and you and your family made her life the best if could be. I'm sure she appreciated that.



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Response to hotrod0808 (Original post)

Fri Mar 21, 2014, 05:08 AM

3. There is nothing you did that caused this

You and your wife need to remind each other frequently. Grief can do funny things to your heads.

I am so sorry you lost her after such a short time with her.

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Response to hotrod0808 (Original post)

Fri Mar 21, 2014, 05:37 AM

4. I can only imagine your pain

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Response to hotrod0808 (Original post)

Fri Mar 21, 2014, 06:24 AM

5. I am sorry to hear that.

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Response to hotrod0808 (Original post)

Fri Mar 21, 2014, 06:46 AM

6. (((((((hotrod0808))))))) May you find comfort in the beautiful memories

your daughter has given you. Hold your family close and give yourself time to grieve. So sorry that a sweet little one has left this world too soon.

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Response to hotrod0808 (Original post)

Fri Mar 21, 2014, 06:59 AM

7. tears, tears, tears...

'Sorry' is not a strong enough word, but it's all I have to offer. (((hotrod0808)))

Your life is not over, take the time to mourn and then all the good memories of her, will help you through this.

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Response to hotrod0808 (Original post)

Fri Mar 21, 2014, 07:24 AM

8. No words, hotrod,

I cannot imagine your awful pain.

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Response to hotrod0808 (Original post)

Fri Mar 21, 2014, 10:55 AM

9. I'm so sorry for your loss.

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Response to hotrod0808 (Original post)

Fri Mar 21, 2014, 12:20 PM

10. The biggest problem

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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Response to hotrod0808 (Original post)

Fri Mar 21, 2014, 09:19 PM

11. I know "I'm sorry" is inadequate

at a time like this, but I am so sorry. I will extend my empathy and understanding to anyone with such a disease.

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Response to hotrod0808 (Original post)

Fri Mar 21, 2014, 11:01 PM

12. I have no words hotrod0808. I am so sorry.

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Response to hotrod0808 (Original post)

Sat Mar 22, 2014, 02:03 AM

13. Oh my God I am so sorry. I cannot imagine. Please accept

my condolences. I don't even know you but if you need anything or your wife needs anything or if you just want to please PM me anytime.

I wish I could make it better.

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Response to hotrod0808 (Original post)

Sat Mar 22, 2014, 03:18 AM

14. I can't imagine the depths of your sorrow, and my

heart goes out to you and your family. Please don't let the anger eat you up.

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Response to hotrod0808 (Original post)

Sun Mar 23, 2014, 12:10 AM

15. I am so sorry you have lost your precious Sophia. nt

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Response to hotrod0808 (Original post)

Sun Mar 23, 2014, 12:22 AM

16. as a mother of a child who is medicallyy fragile,

i feel your pain and sense of helplessness

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Response to hotrod0808 (Original post)

Sun Mar 23, 2014, 05:26 PM

18. Her obituary. I miss her already, and will miss her forever

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Response to hotrod0808 (Original post)

Wed Mar 26, 2014, 05:00 PM

19. My deepest sympathy

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Response to hotrod0808 (Original post)

Thu Mar 27, 2014, 03:19 AM

20. Today

another little girl named Kaitlyn H. died. She is the 16th child in our community on Facebook to die since January 1st. This horrible disease is killing our kids, and nobody has heard of it. Our community is running low on hope.

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