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.
TexasTowelie
(117,261 posts)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)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)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.
lillypaddle
(9,605 posts)Half-Century Man
(5,279 posts)japple
(10,369 posts)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)Your life is not over, take the time to mourn and then all the good memories of her, will help you through this.
brer cat
(26,405 posts)I cannot imagine your awful pain.
A Little Weird
(1,754 posts)hotrod0808
(323 posts)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)at a time like this, but I am so sorry. I will extend my empathy and understanding to anyone with such a disease.
Squinch
(53,041 posts)Maraya1969
(23,014 posts)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)heart goes out to you and your family. Please don't let the anger eat you up.
No Vested Interest
(5,201 posts)deek
(3,414 posts)i feel your pain and sense of helplessness
Response to hotrod0808 (Original post)
hotrod0808 This message was self-deleted by its author.
hotrod0808
(323 posts)Worried senior
(1,328 posts)hotrod0808
(323 posts)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.