Dalton Ray Wintin's SMA Adventures
Donation protected
Dalton Ray Wintin was born on 04/26/2018.
Everything went perfectly fine. He was born with no complications no problems. Just a perfect beautiful baby boy! We went home the next day. Everything was as it should be.
For the first few months everything went perfect. No problems. Dalton was kicking, crying, and eating normally. He hit his first few milestones of rolling over, but that was it. Then that all stopped.
We asked at 6 months if there was a concern for missing milestones and where constantly told he was just a “lazy baby”.
Dalton stopped progressing with movement at about 6months old. He has never crawled, pulled him self up or sat up with out assistance. He is still currently on soft baby foods, and sometimes can eat beans or other soft foods. He is also still currently on infant bottles as he tends to choke on anything else.
Then at his one year check up we saw a different doctor. He picked Dalton up and I could immediately tell something was wrong. It was almost as if his color drained. He said I’ll be right back. When he came back with the nurse. He explained he was going to give Dalton his vaccines with out holding him down. At first I was very scared like why? What if he try’s to move or something.
Then Dalton got his vaccines, he cried. Oh he cried like crazy. I mean they hurt, of course he cried. But his legs did not move. They didn’t flinch or pull away.
The doctor looked at me and said. “There is something wrong with your sons legs.” “They are not working”. My heart sank.
I called Dustin and told him the news.
We both cried.
We were sent to CHOC hospital on May 14th to have a MRI of the brain done. The first thought was a tumor. That was ruled out.
Next on June 11th Dalton had a EEG test. That was hard. Basically they shocked different nerves through out his little body to see which worked.
That’s when it got scary, we found out his entire body is weak. Our hearts broke again.
That day we heard what no parents wants to hear.
“We believe your son has SMA or Spinal Muscular Atrophy”.
Our heads where racing what is SMA what does this mean? What’s next? How did he get this.
Dalton did a genetic swab test, which confirmed Dalton has SMA type 2. Both Dustin and I are carriers which have Dalton a 1 in 4 change of having SMA, we had no idea.
What is SMA? Or Spinal Muscular Atrophy.
SMA is a disease that robs people (mostly children) of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.
SMA affects approximately 1 in 11,000 babies, and about 1 in every 50 Americans is a genetic carrier. SMA can affect any race or gender.
Since the diagnosis. Dalton has received his first wheelchair, although we are working on a custom chair. He has specialized PT weekly and OT every other week. We see Doctors at least once a week for SMA. And once a month we see a pulmonary doctor Dalton has begun to use a cough assist machine because his cough and ability to get rid of fluid in his lungs and decreased.
He still can not crawl or move around with out assistance. He does however roll.
Dalton can not put his arms above his head or grab items that are not close to him.
At this time Dalton is completely immobile. Although we are hopeful that this will change, we have been told to expect that Dalton may never walk.
BIG THINGS AHEAD!
We have transferred to UCLA. That is where the main research for SMA is conducted.
We are currently trying to get Dalton on to the Zolgensma treatment. Zolgensma is a life saving treatment. It replaces the smn1 gene he is missing.
This however is going to be a long process, the medication currently cost $2.1 million! And most insurance are denying it because of the cost. We are looking at clinical trials, but will know more about that in a week or so.
Dalton is a joy is so many life’s. Even with his disability he is such a happy and smart little guy.
I am setting up this go fund me to strictly help with his medical cost. Mainly for Zolgensma, which the current cost is $2.1 million.
Also the funds may be used for PT, OT, respiratory machines, wheelchairs, and much more. If you are unable to help just sharing our page could help spread awareness of SMA. Please just continue to keep Dalton in your good thoughts and prayers as we go through this very scary adventure.
**If insurance is to approve of Zolgensma or we go ahead with clinical trials, then all funds will be used for Daltons medical needs. If there ever comes a time when Dalton no longer has major medical needs. Then the money will be donated to other family’s affected by SMA. **
With much Love
-The Wintin’s.
Everything went perfectly fine. He was born with no complications no problems. Just a perfect beautiful baby boy! We went home the next day. Everything was as it should be.
For the first few months everything went perfect. No problems. Dalton was kicking, crying, and eating normally. He hit his first few milestones of rolling over, but that was it. Then that all stopped.
We asked at 6 months if there was a concern for missing milestones and where constantly told he was just a “lazy baby”.
Dalton stopped progressing with movement at about 6months old. He has never crawled, pulled him self up or sat up with out assistance. He is still currently on soft baby foods, and sometimes can eat beans or other soft foods. He is also still currently on infant bottles as he tends to choke on anything else.
Then at his one year check up we saw a different doctor. He picked Dalton up and I could immediately tell something was wrong. It was almost as if his color drained. He said I’ll be right back. When he came back with the nurse. He explained he was going to give Dalton his vaccines with out holding him down. At first I was very scared like why? What if he try’s to move or something.
Then Dalton got his vaccines, he cried. Oh he cried like crazy. I mean they hurt, of course he cried. But his legs did not move. They didn’t flinch or pull away.
The doctor looked at me and said. “There is something wrong with your sons legs.” “They are not working”. My heart sank.
I called Dustin and told him the news.
We both cried.
We were sent to CHOC hospital on May 14th to have a MRI of the brain done. The first thought was a tumor. That was ruled out.
Next on June 11th Dalton had a EEG test. That was hard. Basically they shocked different nerves through out his little body to see which worked.
That’s when it got scary, we found out his entire body is weak. Our hearts broke again.
That day we heard what no parents wants to hear.
“We believe your son has SMA or Spinal Muscular Atrophy”.
Our heads where racing what is SMA what does this mean? What’s next? How did he get this.
Dalton did a genetic swab test, which confirmed Dalton has SMA type 2. Both Dustin and I are carriers which have Dalton a 1 in 4 change of having SMA, we had no idea.
What is SMA? Or Spinal Muscular Atrophy.
SMA is a disease that robs people (mostly children) of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.
SMA affects approximately 1 in 11,000 babies, and about 1 in every 50 Americans is a genetic carrier. SMA can affect any race or gender.
Since the diagnosis. Dalton has received his first wheelchair, although we are working on a custom chair. He has specialized PT weekly and OT every other week. We see Doctors at least once a week for SMA. And once a month we see a pulmonary doctor Dalton has begun to use a cough assist machine because his cough and ability to get rid of fluid in his lungs and decreased.
He still can not crawl or move around with out assistance. He does however roll.
Dalton can not put his arms above his head or grab items that are not close to him.
At this time Dalton is completely immobile. Although we are hopeful that this will change, we have been told to expect that Dalton may never walk.
BIG THINGS AHEAD!
We have transferred to UCLA. That is where the main research for SMA is conducted.
We are currently trying to get Dalton on to the Zolgensma treatment. Zolgensma is a life saving treatment. It replaces the smn1 gene he is missing.
This however is going to be a long process, the medication currently cost $2.1 million! And most insurance are denying it because of the cost. We are looking at clinical trials, but will know more about that in a week or so.
Dalton is a joy is so many life’s. Even with his disability he is such a happy and smart little guy.
I am setting up this go fund me to strictly help with his medical cost. Mainly for Zolgensma, which the current cost is $2.1 million.
Also the funds may be used for PT, OT, respiratory machines, wheelchairs, and much more. If you are unable to help just sharing our page could help spread awareness of SMA. Please just continue to keep Dalton in your good thoughts and prayers as we go through this very scary adventure.
**If insurance is to approve of Zolgensma or we go ahead with clinical trials, then all funds will be used for Daltons medical needs. If there ever comes a time when Dalton no longer has major medical needs. Then the money will be donated to other family’s affected by SMA. **
With much Love
-The Wintin’s.
Organiser
Stephanie Wintin
Organiser
Apple Valley, CA
