Hi. . . my name is Nikolas.  Nikolas John Winward.  I am almost 3 years old!  I can do lots of things–“all by myself”!  I know what I like, and what I don’t like; I can talk and express myself very well; I can color and help in the kitchen; I can play games with my family; I can pick great shows on TV; I know how to race cars and play marbles and throw balls too!

I have 2 OLDER sisters–Brianna and Ashley–they are twins. 

I have 1 YOUNGER sister–Gidget. 

And I have a mom and a dad too! 

It’s fun to have a family.  We do lots of fun stuff together. 

My dad and me sometimes go out for fries and “boy stuff”.  The rest of them are girls, and sometimes they just don’t understand : ).  But it IS fun to be the big brother!

We share some pets in our house.  Mikki is our “wonder Dalmatian”.  He sleeps a lot and likes to snort and “roof”.  He doesn’t like to have his nails trimmed.  We tried to ride him like a horse, but that didn’t work too good.

“The lizard” (he doesn’t have a name) sleeps in his cage in my room.  He eats crickets.  (Did you know, I like to pretend I was a brown cricket when I was a baby?)  You can’t really pet lizards, but they are neat to look at. 

I know lots of colors.  I like to look at bugs and hold them, and snakes and other things too!  Reading is one of my favorite things to do.  Swinging is too!  And sliding.  Pretending is lots of fun for me.  I can go anywhere and do anything then!  (I tell some pretty good stories too!  I have a great imagination.)

When I get bigger, I am going to go to school, like my sisters.  I want to learn about everything because I am going to be a doctor soon!  Then I can help people to feel better.  My mom and dad said I can be anything I want to be when I grow up.

I love to go outside and feel the sun and the wind and watch the butterflies fly all over!  Going for walks in the stroller is so much fun!  We collect leaves and rocks and sometimes chestnuts and walnuts.  Sometimes we can even stop and talk to people we see or pet an animal.  I want to know everyone and be a friend.

I also have SMA-Spinal Muscular Atrophy.  If you have never heard of SMA, don’t feel bad.  Lots of people never have.  Even my family and me didn’t know about SMA until the doctors told us. 

SMA is a disease that makes my muscles weaker than most muscles are.  So I can’t do a lot of things that most boys my age can do.  But I DID get to crawl for a while when I was a baby, and I CAN still sit up by myself!

Don’t be afraid to ask me about it.  I am glad to tell people about SMA.  The more people that know and learn about SMA, the closer we will come to finding a cure!  It’s not embarrassing to have a disease, that’s something that you just don’t get a choice in.  And you don’t need to feel sorry for me either, there are lots of kids who have it worse than me!

Don’t feel like you have to avoid me, or worry that I won’t like the same things as other kids.  I am just a normal boy, except that I don’t do things exactly the same way!  If you give me a chance, I would love to try just about anything.  I just may need a little extra help.  I will tell you if I don’t like something too.  Communicating is a strong spot for me!

Sometimes people think that I am lazy or spoiled because I sit most of the time. 

Believe me, I would love to be able to walk and run and play and chase!

But most of us who have SMA don’t get to enjoy that privilege.  I can still get around ok though.

I can roll all over, and I can go really fast when someone is chasing me!  And I also get to drive a great wheelchair–it has a “joystick” and I know how to make it go really fast!  I also have a “wild thing” that is purple and fun to drive.

Standing up is important.  But when you have SMA, lots of times you just can’t stand up on your own.  So everyday I go in my “stander”.  It helps me to stand and support my own body weight, but doesn’t just leave me to fall.  It lets me look out the window and reach my art easel and put marbles in my cool marble tower.

Sometimes I get scared of things that most kids aren’t scared of.  Don’t make fun of me for this.  If you couldn’t move very well for yourself, you would be a lot more afraid of things too. 

If I need help, I will ask you for it.  But please don’t try to just take over everything for me because I can’t learn that way.  And I need to learn so that I can grow up to be the best “ME” that I can!  The more I am able to do for myself and those around me, the better off we all will be!

If I do ask for help, and you don’t feel ok about helping, tell me that too.  I am not stupid, and I don’t want to cause trouble for anyone.  And it may be that I need more help than I realize!  Maybe I am asking a friend when I need to be asking a grown up. 

And I need to learn these things to help prepare Gidget for when she gets older.  She has SMA also.  And she is depending on me to be a good big brother and help her!

 Thank you!

 

 

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