|
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
Home About Skyler Our Photos Luke's Page Casey's Page
Our Journals Skyler's Favorite Links Poems Kids View
|
