Here is a brief update on Dylan's busy life...
The 2nd Annual "Drive FORE Dylan" Golf Outing is still on! It is set to
take place on Monday, September 12, 2005 at Honey Brook Golf Club and the
weather forecast looks very promising! Thank you to all those who sponsored
or who are participating in the event, we are looking forward to a great
turnout! If any of you are lucky enough to have the day off, we are still
in need of a few more volunteers. The day is scheduled to begin at 7:30 am
and will finish with catered lunch around 2pm. If you are unable to help
out but would like to bake some goodies for the golfers to snack on before
lunch that would be appreciated also!
A HUGE THANK YOU goes out to Bill Grablewski for organizing such a well
planned event in cooperation with Dylan's daddy and to Vince Penderghest for
making such awesome sponsor signs, Thanks guys...you're the best! Our golf
committee spent a lot of time and energy to make this happen too and we'd
like to thank each one of them personally...Lori Halpin, Maureen Gregory,
Laurel Jordan, Robb Holman, Maureen Hayes, Roni Godwin, Vince & Bill
(again), Christina Harlan, Sheri Michinok, Denise Longua, Rob Westerlund,
Brad Martin, Crystal Harris, Jackie Marchitell, Kim Wenner, Daren Moran and
Suzanne Manning. We couldn't have done it without you guys!
A few more tidbits of news...
Dylan's VEST airway clearance system was just approved by the insurance
company after a trip to IBC in Philadelphia to appeal the immediate
decision, this process took over a year to reach the final approval stage!
Brian will also be on our local cable channel 44 (a Comcast News channel)
every night for the next few weeks 54 minutes after the hour to promote our
foundation and carrier testing.
We are taking a trip up to NYC tomorrow to spend a very unique day with one
of Dylan's newest friends! Brian and Dylan met a gentleman by the name of
Stewart who attended this year's National Tay-Sachs Conference in none other
than New Orleans! Stewart and Brian both presented their stories to a panel
of scientists and researchers, Brian spoke about Dylan's battle with
Infantile TSD and our experience with IVF and Brady's birth (the day after
his return) and Stewart spoke about his battle with Late Onset TSD. Stewart
was diagnosed with Tay-Sachs in his early 30s after he was married and had a
family of his own. He is now in his 50s and about to become a grandfather.
Stew depends on his service dog to guide him through the day in his
wheelchair while he still continues to work and support his family. He is
beginning to slur his speech but his mind is completely together and he is
sharp as a tack! The moral to the story is that Stewart was introduced to
the panel as a HUGE YANKEES FAN and Brian as a HUGE RED SOX FAN! After the
conference. Brian and Stewart continued to keep in touch with each other and
Brian felt compelled to do something special for Stew. He notified the New
York Yankees of this inspirational story and they & Mr. Steinbrenner are
hosting us in the handicapped section of this weekend's Boston Red Sox/New
York Yankees' series!!! The New York Post and the Daily News are supposed
to interview them at the game and write an article in this Sunday's paper!
Brian is hoping that Regis reads the article on Monday's show and that this
will trigger additional publicity. We can only hope!
Dylan is also settling into his new role as a "big brother". He definitely
knows there are new noises in the house (which are quite loud at times) and
Brady is fascinated with all of Dylan's equipment and "toys"! His little
cousin Kenny had the opportunity to participate in Music therapy a few weeks
ago, he loved to bang on Dylan's gathering drum which we use for percussion
therapy as well as music!
We are also getting excited for their newest baby cousin to arrive in
November, Auntie Jennifer and Uncle Brian are going to be great parents! We
got to visit them at the beach for their house warming party a few weeks ago
for a luau! Last weekend we hung out at Uncle Kenny & Aunt Crystal's place
for their annual pig roast, we spent the rest of the weekend packing up food
and baby stuff for the hurricane families!
Anyone who is interested in gathering some candle orders...THE FALL AND
CHRISTMAS SCENTS HAVE ARRIVED!!! WE ARE TAKING ORDERS EARLY, BY
MID-OCTOBER, CHRISTMAS SCENTS ARE SOLD OUT! Order forms are still available
on our website www.djsfoundation.org or call 610-593-9930 for more
information on how you can generate sales of these popular items!
Other than that, business as usual... Brady got to experience his very first
Patriots game tonight where he watched his namesake master the field on his
way to another title? Who knows? We also got to take Brady to his very
first Phillies game last night. He must have thought "this screen is a
little bigger than our tv screen at home"! He is getting bigger every day
at almost 15 pounds!
That's all for now...Enjoy your weekend!
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