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hotrod0808

(323 posts)
Fri Mar 21, 2014, 03:07 AM Mar 2014

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.

20 replies = new reply since forum marked as read
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March 20, 2014 my life changed forever (Original Post) 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

TexasTowelie

(117,261 posts)
1. I'm sorry to hear about your loss.
Fri Mar 21, 2014, 03:14 AM
Mar 2014

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.

CJCRANE

(18,184 posts)
2. I hope you can treasure the moments you had with her.
Fri Mar 21, 2014, 04:06 AM
Mar 2014

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



Warpy

(113,131 posts)
3. There is nothing you did that caused this
Fri Mar 21, 2014, 04:08 AM
Mar 2014

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.

japple

(10,369 posts)
6. (((((((hotrod0808))))))) May you find comfort in the beautiful memories
Fri Mar 21, 2014, 05:46 AM
Mar 2014

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.

Stellar

(5,644 posts)
7. tears, tears, tears...
Fri Mar 21, 2014, 05:59 AM
Mar 2014
'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.

hotrod0808

(323 posts)
10. The biggest problem
Fri Mar 21, 2014, 11:20 AM
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.

Lifelong Protester

(8,421 posts)
11. I know "I'm sorry" is inadequate
Fri Mar 21, 2014, 08:19 PM
Mar 2014

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

Maraya1969

(23,014 posts)
13. Oh my God I am so sorry. I cannot imagine. Please accept
Sat Mar 22, 2014, 01:03 AM
Mar 2014

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.

pnwest

(3,296 posts)
14. I can't imagine the depths of your sorrow, and my
Sat Mar 22, 2014, 02:18 AM
Mar 2014

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

deek

(3,414 posts)
16. as a mother of a child who is medicallyy fragile,
Sat Mar 22, 2014, 11:22 PM
Mar 2014

i feel your pain and sense of helplessness

Response to hotrod0808 (Original post)

hotrod0808

(323 posts)
20. Today
Thu Mar 27, 2014, 02:19 AM
Mar 2014

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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