Volume 11, Issue 2 - Barth Syndrome Foundation

Julie, Angelo, and Shelley at BSF's Southeast Outreach
Some of our Barth boys, young men (and one sibling!) at
BSF's Midwest Family Outreach
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Outreach. (All photos courtesy of BSF ~ 2011)
Page 14 Barth Syndrome Journal ~ Volume 11, Issue 2
Southeast Family Outreach
(Cont’d from page 13)
As usual, we stayed up way too late and woke up way too early
so that we could get the most of every precious moment together.
We canoed down the Steinhatchee River; spotted wildlife and
in some cases paddled like mad to avoid some of the wildlife
we encountered during our excursion.
Michael Bowen and Sam were nowhere to be seen for about 30
minutes after the third canoe arrived at our destination point. A
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of the BSF Blue Lemonade stand (Jim Zurbrick) to take me up
river to search for our wayward paddlers. We found them taking
a break on the bank of the river. Michael was to be towed back.
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were throbbing after four hours of paddling. All the children were
happy to be back at the Landings for an afternoon swim.
The petting zoo was a big hit with the children. I don’t think the koi in
the koi pond were intended to be a part of the petting zoo, but that
didn’t stop the kids and the men from sticking their hands in the pond.
As always, it was sad to say goodbye at the end of the weekend. We
were all surprised to learn that Angelo Florez, Michelle Garcia, and
her son, Matthew had taken a three-hour side trip to Orlando to go
to Walt Disney World when we saw pictures of them at the park.
Midwest Family Outreach
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The weekend of July 22-24, 2011 was a scorcher in Indianapolis,
as heat warnings adorned television sets and radios. This didn't
stop Devin, Henry, Wyatt, Noah, John, Dylan and Peyton, and
their family members from traveling a total of 1,557 miles to join
together for the Midwest Barth Syndrome Outreach.
Friday, friends were reunited and new friendships were created.
We cooked out, played baseball, rode tricycles, the kids chased
each other around the house and the yard. Red faces were
aplenty as the evening weather didn't show any signs of a cool
down. The laughter never ended!
Saturday morning we all met at the Indianapolis Children's
Museum, as dinosaurs, trains and Dora the Explorer awaited our
arrival. Later that evening, we were joined by Henry's favorite
hematologist, Dr. Grzegorz, as he joined us for pizza and a
very special birthday celebration. Seven candles were atop a
mandarine orange cake and exciting gifts surrounded. Happy
Birthday was sung by all as we celebrated Devin's 7th birthday.
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was again played, tricycles were rode, and lots of kids with red
faces continued to run around the house and yard. Non-stop
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the public pool to swim, relax, share more laughs, and catch up
before the outreach came to an end. We couldn't have asked
for a more wonderful weekend.