Luke and Casey on SMA and Children with Disabilities
**This is a reminder for those who read this that Luke and Casey are living with an SMA sibling who happens to follow the NIV protocol. They are both very aware that there are children who don't follow the same treatment plan as their sister and they were worried that they might hurt the feelings of some parents who have lost their children to SMA. They just wanted you to know that this is their experience with SMA and they have formed their views through living with Skyler and the management plan she follows. Thanks for your understanding.***
For the first part of the interview, I asked them the questions separately so that they wouldn't copy each other's answers. You'll be able to tell when we put them together for the rest of the discussion :o)
Luke and Casey...What is SMA?
Casey: SMA is a thing when you can't walk. It is a disease. And people are trying to find a way to help the kids to walk.
Luke: It's something which makes you not able to walk.
How do you get SMA?
Casey: From the genes. Your daddy carries the genes and your mommy carries the genes. The mommy and daddy marry and it's like their blood mixes together and the baby gets the genes. You might not know what I mean about "the genes". What I mean about "the genes" is that they're not like "the wear jeans" (Casey shakes her hips here) but they're like the germ genes.
Luke: Your mommy and daddy carry the SMA genes and you have a child with SMA.
Then why don't you have SMA?
Luke: I have NO idea!
(Casey sneaks into the room during Luke's interview)
Casey (whispering): Because we don't have the genes!
So, if you have SMA, what does it do to you?
Casey: Lots of babies die from SMA. The babies go up to Heaven and WE think they turn into ANGELS!
Luke: It makes you disabled.
Luke, what's your take on Angels?
Luke: It's sad that the babies died. But the good part about it is that they get to go up to Heaven and live forever.
What can you do to help someone you love who has SMA?
Casey: You have to use a suction machine. And you have to use a cough machine. And you have to use a BiPap. And you use a heart rate thing (pulse ox). These things can help kids.
(This is where Casey really pipes in and says she knows that not all kids use the machines to help them and that she doesn't want to hurt their parents' feelings by talking about that too much.)
Luke: Get machines! And when the baby desats you can put them on their BiPap. But you can also make them happy by singing them songs, or putting on Elmo or Blue's Clues or Barney, or letting them hold balloons or just playing with them!
What do you guys think about kids with disabilities?
Luke: It's sad. But Skyler is happy, so that makes me happy that she's happy.
Casey: I think that it's sad. I think they can do lots of stuff...
Luke: Yeah! Like this, this and this (at this point, Luke is wiggling his legs, waving his arms and shaking his head and smiling)!
Casey: I just want to say that for the kids who can't hear, I'll just do hand signs for them (Casey creates her own sign language here). That's all I think...
What do you think the scientists are doing for kids with disabilities?
Luke: They're trying to find a cure for SMA.
Casey: They're trying to help the babies to walk. And they're making them medicine. They're feeding it to the mice first to test it. 'Cuz if they don't test it on the mice first, it might make the babies sicker.
Luke: Eeeeew...on the mice?! (and this is OUR little scientist?!)
Is there anything else you want to say?
Casey: Your baby might like poems.
Luke: Why did God create SMA?
(This catches me a little off-guard)
Why do YOU think God created SMA?
Luke: Because there's asthma and other diseases. And also it's not like the kids are any different. They're still kids! They like to play just like you and me!
Casey: NO! Kids are all different! Different color skin, different hair, different personalities!
Luke: Yeah, I do think that...but kids are still just kids.
And, as Luke would say...The End.
For more specific information (by grown-ups!) on SMA, please go HERE