This is an open letter to other families who have a child who has SMA Type I that are trached and vented. It is with much sadness, and despair that every quarter I read the stories of the children that have succumbed to this horrible disease, but I never read of any stories of hope and encouragement to let other people and families know that there is HOPE and LIFE after traching and venting their child.
I should know. I have a child who is going to be six years old on February 26, 2004. He has done so many things. Karison, my son, has SMA Type I. He was trached and vented when he was seven months old. He has had his share of hospitalizations and infections, and several very, very close calls, but he has been in a Hawaiian Tropic Beauty Pageant. He was the only disabled participant to have ever entered. The county newspaper did a whole article on him, and took pictures, and a lot of public awareness was given for SMA. When Karlson took the stage, by several men lifting his wheelchair onto the stage, the applause was deafening. The more everyone cheered, the more he smiled. I was able to hold his elbow, and he was able to wave to everyone. By the way, he won first runner up, and also won trophies for best smile, and best hair.
The Marines were holding a TOYS for TOTs event, and they made Karlson an honorary marine. Karlson has been to the airport, watching the planes coming and going. He has been to Disneyland on two occasions. He goes to the library to get books and videos. Karlson has gone to Chuckie Cheese Pizza Parlor, and got to ride the coin operated Chuckie Car. It took a little doing, but with 4 hands, this was accomplished. He even had the opportunity to sit on a Shetland pony and have his picture taken. This took 6 hands to accomplish since he has no neck or body control due to SMA. Karlson has been trick-or-treating on Halloween the last 3 years. He is very polite asking for candy, and wishing everyone Happy Halloween. He speaks with a trach and ventilator in place. Karlson has gone to the toy store to learn how to pick out a toy. Karlson recently posed for an international company that has products for disabled people.
Does this sound like we do “normal things” with Karlson? You bet it does. We try very hard to make everyday things an adventure for Karlson. Also, it is a wonderful way to tell people about SMA. If people look like they want to talk, I stop and tell them about SMA and all the neat things about Karlson. Karlson will be starting a home kindergarten program this September. He has advanced 16 months from his last Individual Educational Program for school. (Yes, I’m bragging on this accomplishment.) Karlson can only move very minimally, roll a very small amount, and move his legs and hands, but he is doing life, and has a good quality of life.
I challenge all the parents out there who have a Type I SMA child that is trached and vented to flood FSMA with wonderful stories to help encourage parents that have a child with Type I. What a wonderful opportunity for a newly diagnosed child, for their families to read about life after traching and venting their child. Who knows, we may even get our own section in the FSMA newsletter. There is more to life than waiting for our children to die...I should know.