TODAY

TODAY   |  May 09, 2013

Mom: Son with rare epilepsy is ‘my hero’

Seven-year-old AJ Kelm is battling a rare form of epilepsy and because he can’t be left alone, it requires a lot of time and energy from his mom, Cassie, who is also trying to raise three other kids. Kathie Lee wrote a special song “For you,” sung by Broadway performer Jessie Mueller.

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This content comes from Closed Captioning that was broadcast along with this program.

>> and today we meet our newest "everyone has a story" contest winner. kathy kelm wrote into us honoring her 7-year-old son avery, who they call a.j. we'll meet everyone in a moment.

>> first let's listen to what kathy had to say in her letter to us.

>> my name is cassie joe kelm. i'm 30 years old and wroiiting about my son, a.j. he has a rare form of epilepsy. it is so rare they are having a hard time understanding it. he is currently on three medications that are supposed to help him. he can have anywhere from two to ten seizures a day. every seizure is different each time. he can't do anything alone. every day is a challenge for him, as he cannot play outside. i have been going above and beyond for him trying to find help so he can be a regular boy. he has been having a very hard time learning, as his lgs epilepsy makes it a struggle for him. he has a very hard time learning by listening. he can bearely write his name at all and when he gets frustrated he cries, and i cry too. i love my a.j. so much. i won't give up trying to find help for him. he's not an only child. he has a 10-year-old sister, 4-year-old brother and 3-year-old sister. i am desperately searching for help to help my son. he is my hero and i would do anything for him. i am avery's number one fan.

>> that is a mother's heart right there. cassie is here with her son a.j. and her equally wonderful husband, james.

>> how is a.j. doing?

>> he looks to be doing pretty well.

>> he looks darn good as spider-man.

>> he's doing a lot better. when he was first diagnosed, he would have up to 30 seizures a day. as they upped his medication, it got better.

>> so it seems to be on a good level now, right?

>> well, when he's awake, his eeg is clear. sleeping, he's having two or three-minute long seizures.

>> do you like looking at yourself right there? a.j., you flew up on a plane, right? have you been on a plane before or was this your first time?

>> i had two plane rides.

>> they had to make a connection coming in from illinois.

>> was it fun flying here?

>> was it cool to be so high up in the sky looking down?

>> fell asleep halfway here.

>> that's good. was this the first time all of you have been to new york?

>> yes.

>> now, as a family because obviously your other kids have to know what a.j.'s needs are, how do you deal with that with your other children?

>> my two youngest, i don't think they really know what's going on, but my oldest, our 10-year-old daughter, tessa, she no, sir if he has a seizure, she knows what to do. she knows if she has to tell somebody or whatever, you know, because if he falls or sometimes he runs, you have to grab him so he doesn't run anywhere.

>> dad, i know it may be tough because your wife is home taking care of your son and you're off trying to make money for the family, how do you keep your spirits up around the home?

>> it's difficult, but we just manage to deal with it and, you know, get the help we need.

>> take it one day at a time.

>> take it one day at a time.

>> are you getting all the medical help you guys need?

>> yeah, his doctors -- he goes to st. jude in peoria.

>> fantastic.

>> so he's really -- the doctors there are great. normally the doctors when they call, the doctors don't call you themselves, but his doctor calls me himself and talks to me personally.

>> is this something he'll grow out of?

>> no.

>> well, he's getting better, that's the good news. a.j., we wrote you a song, do you want to hear it when we come back?

>> he said he likes the one hoda likes.

>> it's not like that, i promise you.

>> he likes adele too.

>> we have a terrific broadway performer. we're going to sing a song for you, a special performance just for you

>>> a.j. is with us and his mom and dad and we have a very special jesse mueller can be seen in why t" nice work " with judy kay and she's going to be singing a song that david friedman and i wrote just for you, a.j. it's called "for you." it's a song for you and it's called "for you." here's jesse to sing our song. i wanted to be a mother it always seemed clear to me that there could be nothing more filled with joy that i could hope to see and so when i had my children, they were my dream come true and if life isn't tough for us, it sometimes seems there's not enough for us there's nothing that i wouldn't do for you, my son, for you for you i would go to the ends of the earth to keep you from pain and distress for you if it takes that, then that's what it's worth to turn every no into yes i always will be your mother there's nothing i'd rather do than spend every day planning every new way to make our dreams come true and together we'll weather whatever, my love for you will see you through because one thing will always be true, my son, the moment that our lives are through, my son there's nothing that i wouldn't do for you, my son, for you there's nothing i wouldn't do for you, my son, for you

>> beautiful.

>> gorgeous, jesse .

>> what a beautiful voice she has. thank you, sweetheart.

>> we want to thank jessie mueller for singing so beautifully. she's in " nice work " at the imperial theater through june 15th here in new york. also composer dave friedman is here, go to his website and dave wild, who's sweet enough to take time out of his busy hollywood --

>> did you enjoy your song? you did?

>> i loved that.

>> we like to do something nice at the very end too. this is our favorite part, a.j. your mom mentioned sometimes in school you have trouble learning, so the folks -- you're a visual learner, so the folks at ipad would like to help out. and so target electronics heard about you and they are sending you two mini ipads and an apple itunes gift card. so we want to thank the folks at target electronics for that.

>> that's what you've been wanting, right?

>> hey, a.j., i hear you also have a message for somebody. who do you want to say something to?

>> my grandma and grandpa.

>> are they watching? okay. look right into that camera and we'll say it with you. on three. 1, two, three.

>> hi grandma and hi grandpa.

>> let's add love you too. love you!

>> whoever grandma and grandpa are, they appreciate us. so glad we could be here for you guys today.