Death of 3-year-old spurs Ottawa school to hold auction to help pay medical bills / LJWorld.com

Archive for Thursday, November 30, 2006

November 30, 2006

During her short life, 3-year-old Ottawa resident Chloe Robinson developed a love for knock-knock jokes. She told them to anyone who would listen: doctors, nurses, family members. Her favorite:

Knock, knock.

Who's there?

Boo.

Boo who?

Don't cry, it's just a joke.

"We joked that she knew every knock-knock joke that you could ever know," said her mother, Chrissy. "She was very smart for being locked up in the hospital room."

Chloe died earlier this month at Children's Mercy Hospital in Kansas City, Mo., after a lifelong battle with severe combined immunodeficiency, or SCID. This weekend, the Ottawa elementary school where Chloe's father works is holding a silent auction fundraiser to help the family defray its medical costs, which haven't yet been tallied.

"Anyone that's seen pictures of Chloe or heard about her struggle ... you couldn't help but fall in love with her," said Tori Wilson, a technology aide at Garfield Elementary School in Ottawa. "That same spirit is alive in Josh and Chrissy too ... They're part of us."'

The auction will be from 9 a.m. to 4 p.m. Saturday at the elementary school. Items donated include autographed Kansas City Chiefs memorabilia and Kansas University men's basketball tickets from coach Bill Self's personal allotment, Wilson said.

If there's any money left over from paying bills, the family plans to use it to help start a foundation in their daughter's memory that will help other families in a similar situation.

Photo by Richard Gwin

Chloe Robinson, shown when she was a baby, was born with severe combined immunodeficiency, or SCID, and died from the disease earlier this month. The school where her father teaches is holding an auction to help with medical bills.

"Rather than continue to ask why, we're starting to decide what we can do to make sure that, even though she died early, her life was still meaningful," said her father, Josh, a first-grade teacher.

Chloe was born in August 2003 in Lawrence. From birth, she had chronic gastrointestinal problems that were later attributed to her immune system.

She spent only a few weeks of her life in Ottawa. The rest of her time was spent under medical care in Kansas City, Nebraska, Boston, North Carolina and finally in Cincinnati, where she received a bone-marrow transplant early this year aimed at replacing T-cells in her body.

"On her transplant day, we threw a big tea party," Josh Robinson said. "Since then, tea parties were her favorite thing to do."

She had a way of making adults laugh, her parents said. They said that once, when she went into surgery, a hospital employee came out laughing because Chloe had been telling knock-knock jokes up until the point that she went under anesthesia.

After her bone-marrow transplant, her immune system improved. But in August of this year, her liver began to fail.

For the last weeks of her life, she left the hospital where she'd been staying in Cincinnati and returned to Children's Mercy in Kansas City.

Photo by Richard Gwin

Josh and Chrissy Robinson, of Ottawa, hold a picture of their daughter Chloe, who died earlier this month.

"We were basically sent back to Children's Mercy with the understanding that her liver was going into failure, and we wanted her to be closer to home, wanted her to be able to spend time with her family," Josh Robinson said. "I don't think she knew necessarily that she was dying, but we got the sense that she knew something wasn't right."

Near the end, the decline in her health happened quickly. Even on her last day, when she developed internal bleeding, she had been sitting up in bed, painting, telling jokes and reading books with people, her father said. She died Nov. 11.

"Our greatest fear, knowing that she was dying, was that we were going to have to be the ones to decide to turn something off or stop something. There weren't any choices. It was that quick," Josh Robinson said. "She curled up with her mom and went to sleep."

At her memorial service, the Robinsons had a photo of Chloe with room for visitors to write a knock-knock joke around the edges. They also gave away tea bags with a note that said, "With your next cup of tea, think of Chloe."

The Robinsons said they're grateful for the help they've received from the community.

"It's been amazing," Josh Robinson said.

Discussion

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30 November 2006
at 6:04 a.m.

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trinity (Anonymous) says…

i echo your sentiment, plumber…love&grace to this family and their angel.
30 November 2006
at 8:29 a.m.

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mommaeffortx2 (Anonymous) says…

it is hard to watch a child slowly slip away.
Have a grandson that spends alot of time in childrens mercy, never easy, but it is amazing how the little angels just seem to take everything is stride and keep being happy joyful people.
Bless this family and their strength.
30 November 2006
at 9:11 a.m.

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mom_of_three (Anonymous) says…

What a sad, beautiful story. I just wanted to cry.

so sorry for their loss. hope the weather is good for everyone to turn out for the silent auction.
30 November 2006
at 9:40 a.m.

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crazyks (Anonymous) says…

I know this little girl's aunt, and they are all a wonderful, loving, beautiful family.

They are heartbroken over the loss of this sweet little girl. This is what is wrong with the medical profession…that while you are grieving the loss of a child, you somehow still have to worry about the medical bills or risk being taken to court…

It's a terrible tragedy. My thoughts and prayers are with the family.
30 November 2006
at 11:23 a.m.

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nlf78 (Anonymous) says…

I am bawling after reading this story. Having a daughter that spent her first weeks in the hospital because she was premature, makes this very close to home for me. My prayers are with this family.
30 November 2006
at 11:37 a.m.

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yellowhouse (Anonymous) says…

to our little angel chloe

God sent you down for just a while
You made us so much stronger
We only wish we could have seen you smile
For just a little longer

We held you in our arms with love
We tried hard not to weep
As Angels called you up above
To safely guard and keep.

God didnt send you down to earth
To fill our life with sorrow
Nor did he promise at your birth
You would still be ours tomorrow

Our little Angel you will always be
Though your days on earth were few
We shall cherish every memory
Of every moment spent with you.

Because your gone our hearts are sad
But we shall find you one sweet day
So rest assured your mom and dad
Are not all that far away!
30 November 2006
at 11:50 a.m.

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concernedparent (Anonymous) says…

This story makes me absolutely sick to my stomach. I can't imagine the pain this family has gone through. I don't know if I myself would be strong enough to be in this situation. I have a 5 year old daughter and can't even imagine the thought of losing her. I don't pray often enough, but the Robinson family will certainly be in my prayers today. God bless you and the fantastic people you are.

30 November 2006
at 12:04 p.m.

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OldEnuf2BYurDad (Anonymous) says…

The Robinson's have been through a lot. They are close friends with some friends of mine from church. Financially, they are ruined. A collection had to be taken up just to provide them with the money for Chloe's burial.

Devastating, all around; and yet I know that the Robinson's were blessed to have had Chloe.
30 November 2006
at 3:06 p.m.

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smackdaddy30 (Anonymous) says…

Chloe is my best friend's niece. Having been around this little angel, everything her mom and dad say about her is true. You could never leave her presence without a smile. Even though she was almost always hooked up to a machine, she laughed and played like any normal child should. When I found out about Chloe's passing, I was devastated. Josh and Chrissy did everything they could for their daughter, literally everything. I know this is not really a time to try to plug something but, give bone marrow, sign up to be a donor!!!
30 November 2006
at 3:09 p.m.

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Celeste (Anonymous) says…

How tragic, that such a brave little girl should be taken so soon. My thoughts and prayers go out to her parents. I can't even imagine what they must be feeling right now.

My sincerest sympathies.
30 November 2006
at 3:19 p.m.

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mb_hyperactive (Anonymous) says…

I'm so sorry! I know how you feel! My baby sister was only 8 months when she died! She had down sydrome and we lost her to sids! She had a twin sister, Emma who is now 4! When my mom read about your daughter she started to cry because your daughters favorite joke is Emma's too! My mom can only imagine hearing Emma say it and then fall asleep and never wake up! I am so sorry! You are in my entire familys prayers!
30 November 2006
at 3:55 p.m.

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billandstef (Anonymous) says…

My thoughts and prayers are with you and your family. My daughter spent most of her first year at Childrens Mercy and it was so hard to deal with. I will pray for your familys strangth.
30 November 2006
at 10:22 p.m.

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yellowhouse (Anonymous) says…

It can only take a minute to meet someone,

one minute to lose them

And a lifetime to forget.