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Holiday Heart for Bobby

SUMMARY: Bobby is a 7 year old boy with 22q syndrome. He was born with a heart defect and
had open heart surgery at 11 months old. He now needs a second one to replace his valve. It is
scheduled for December 30th. Our family is working class, and is unable to pay the
out-of-pocket costs of the surgery, to compensate for missed work, and to pay for our stay in
Kansas City.

Any amount will help. $1, $10, $100, $1,000. Anything.
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Long(er) Story:
Bobby is a 7 year old kid who enjoys playing with cars, watching fire alarm videos on YouTube,
and antagonizing his older brother. He says hello to strangers in grocery stores and befriends
everyone he meets.

He was born on June 17th, 2009 with a rare chromosomal genetic disorder that is known as 22q
or Di-George Syndrome. This disorder is caused by a micro-deletion of the 22nd chromosome and
typically causes heart defects, immune suppression, and palatal deformities. Bobby has had all of
these. His heart defect is called tetralogy of fallot with an overriding aorta: he was born with a
pulmonary valve too small and a hole in his heart.

At 2 days old he had a balloon procedure to open up his pulmonary valve. This was a quick fix in
hoped of delaying surgery until he was strong enough to have open-heart surgery.
At 11 months old he had open heart surgery to replace his pulmonary valve and to repair the hole
in his heart.

We had every comfort imaginable: the most friendly and competent staff at Children’s Mercy
Hospital, an understanding workplace that allowed for time off, a free stay at the Ronald
McDonald House across the street, and an overflow of familial support. Yet, it was still very
hard. Exponentially difficult both emotionally and financially.

Now he is 7 and in need of a second open heart surgery. His valve is leaking so bad that the right
side of his heart is enlarging from being overworked and his fatigue is impeding his functioning.
We have a flex spending account to try to combat copay’s and out-of-pocket costs, yet, we continually spend the entirety that is stashed away by the end of the year. This year, we don’t have anything left
stashed away either in the flex spending or in savings. This year, we won’t be able to stay for
free at the Ronald McDonald house because they’re booked.

We are hoping to raise money to alleviate:
– The 20% cost of surgery (and other medical expenses) that insurance won’t cover
– The cost of being out of work for about 2 to 3 weeks
– The cost of renting a place to stay in Kansas City and meals while being away from home.

My life has been truly blessed by this little boy and we wouldn’t have had it any other way. He has
battled many challenges in the 7 years he has been with us. Including 6 surgeries. It amazes us
daily at how strong he truly is. It is terrifying to have a child undergo this type of surgery, but we
know that our family and friends are always on our side and willing to be there anytime we need.
It is not easy asking for help, but this surgery is going to be very difficult for us financially. We
are hoping for any help paying for this surgery, and other expenses associated with being away
from home, as we have to travel to the hospital that is capable of doing the surgery he must have.
Any little bit would help and go a long way with his medical bills, travel, food and hotel
expenses.

Bobby is the sweetest little boy and deserves every chance to have a happy and healthy
life, and we deserve to go through this difficult time without worrying about putting food on the
table.

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