So this is kind of a long story, but on December 30th 2018 the life of my son changed drastically in a period of about 3 hours.
My 13 year old son was at his mother’s house and at about 5:30PM he offhandedly mentioned that his hand felt kind of funny, like it was asleep. No one thought too much of it and a little while later his mom asked him to do some chores. He said that he felt like he couldn’t get up off of the couch. His mom thought he was just being lazy and told him that he needed to get moving. He managed to get up, but he was very unsteady as he walked and kept bumping into things. As this point she started to get concerned and decided to take him to the hospital. They got to the hospital at about 8:30PM and at that point he could no longer feel or move anything below his shoulders.
They ran a number of scans and tests at the hospital and then at about 3:30AM they transferred him to a large childrens hospital in Orlando. He spent most of January in the hospital, including two weeks in the ICU and was diagnosed with AFM, which is a reasonably new and rare disease. There were less than 200 cases in the US last year.
After the hospital he spent several weeks at an inpatient rehab hospital and now he’s home with his mom. Over the last few months he’s been slowly regaining some movement and sensation in his hands and arms. He’s not quite at the point where he can feed himself yet, but recently he’s been able to move enough to be able to push buttons on a TV remote and to be able to touch his face when it itches. This is actually a pretty huge quality of life improvement for him and the people taking care of him. For quite some time literally needed someone by his side 24/7 because he couldn’t do anything for himself. He needed someone to feed him, someone to scratch his face when it itches, someone to change channels on the tv for him, etc. He also now has a powered wheelchair that he can control with his head which also helps give him a little bit more independence.
We are still not sure exactly how much he will regain, but we know he has a very long and hard road ahead of him. The doctors believe that he will continue regaining some movement and sensation over the next year, but no one can really say exactly how much he will get back. They also say that after a year patients typically plateau, so whoever he is at the beginning of 2020 is likely where he will stay.
Through all this we are extremely thankful that he is getting movement back in his arms and hands. Some people with this disease remain a quadriplegic and having the ability to control his arms and hands is pretty huge. We are also very thankful that the disease didn’t progress any further. It’s very common for the disease to interfere with breathing and some patients need to be on a breathing machine. Luckily he never went that far.
We are very hopeful that we will continue to see more gains with his hands and arms and we really hope that he will start to get control over his legs as well. Just today while we were at the neurologist’s office we believe that we may have seen a little voluntary twitch in his right leg, which is the first time that we’ve seen any voluntary movement in his legs at all.
So with that background, one of the things that he really enjoys is getting postcards from around the country and around the world. His aunt had posted my address asking for postcards a few weeks ago without telling us and over two or three weeks he got 20 or 25 postcards in the mail. Seeing the pictures of different places and reading the little notes people wrote always made him smile.
So if you’re still reading this and have a few minutes to send a post card I know that he would be really happy to receive them. His name is William and postcards can be sent to this address:
William S
1096 Stillwater Ave
Deltona, FL 32725
Thanks much
My 13 year old son was at his mother’s house and at about 5:30PM he offhandedly mentioned that his hand felt kind of funny, like it was asleep. No one thought too much of it and a little while later his mom asked him to do some chores. He said that he felt like he couldn’t get up off of the couch. His mom thought he was just being lazy and told him that he needed to get moving. He managed to get up, but he was very unsteady as he walked and kept bumping into things. As this point she started to get concerned and decided to take him to the hospital. They got to the hospital at about 8:30PM and at that point he could no longer feel or move anything below his shoulders.
They ran a number of scans and tests at the hospital and then at about 3:30AM they transferred him to a large childrens hospital in Orlando. He spent most of January in the hospital, including two weeks in the ICU and was diagnosed with AFM, which is a reasonably new and rare disease. There were less than 200 cases in the US last year.
After the hospital he spent several weeks at an inpatient rehab hospital and now he’s home with his mom. Over the last few months he’s been slowly regaining some movement and sensation in his hands and arms. He’s not quite at the point where he can feed himself yet, but recently he’s been able to move enough to be able to push buttons on a TV remote and to be able to touch his face when it itches. This is actually a pretty huge quality of life improvement for him and the people taking care of him. For quite some time literally needed someone by his side 24/7 because he couldn’t do anything for himself. He needed someone to feed him, someone to scratch his face when it itches, someone to change channels on the tv for him, etc. He also now has a powered wheelchair that he can control with his head which also helps give him a little bit more independence.
We are still not sure exactly how much he will regain, but we know he has a very long and hard road ahead of him. The doctors believe that he will continue regaining some movement and sensation over the next year, but no one can really say exactly how much he will get back. They also say that after a year patients typically plateau, so whoever he is at the beginning of 2020 is likely where he will stay.
Through all this we are extremely thankful that he is getting movement back in his arms and hands. Some people with this disease remain a quadriplegic and having the ability to control his arms and hands is pretty huge. We are also very thankful that the disease didn’t progress any further. It’s very common for the disease to interfere with breathing and some patients need to be on a breathing machine. Luckily he never went that far.
We are very hopeful that we will continue to see more gains with his hands and arms and we really hope that he will start to get control over his legs as well. Just today while we were at the neurologist’s office we believe that we may have seen a little voluntary twitch in his right leg, which is the first time that we’ve seen any voluntary movement in his legs at all.
So with that background, one of the things that he really enjoys is getting postcards from around the country and around the world. His aunt had posted my address asking for postcards a few weeks ago without telling us and over two or three weeks he got 20 or 25 postcards in the mail. Seeing the pictures of different places and reading the little notes people wrote always made him smile.
So if you’re still reading this and have a few minutes to send a post card I know that he would be really happy to receive them. His name is William and postcards can be sent to this address:
William S
1096 Stillwater Ave
Deltona, FL 32725
Thanks much
