We wanted to wish everyone a Merry Christmas and a Happy New
Also, a few reminders to look for Dylan's commercial on Tay-Sachs this
coming holiday weekend on ABC Family. The times seem to be consistently
around 19 and 49 after the hour. If you would like an exact schedule, I can
forward it to you when I receive it tomorrow.
Then, don't forget to look for him to appear on QVC on Christmas night from
Midnight to 6 am. This is appearing NATIONWIDE for whoever has QVC on their
cable network! We were very happy to be able to inform such a large
audience over the holidays as a dedication to the little angels who will
always remain in our hearts. It is our effort to eliminate Tay-Sachs
Disease and the anguish that families endure on a daily basis.
Dylan and Brady had the chance to sit on the real Santa's lap last night at
Park City Mall. Once again, Dylan made Santa speechless and he and all of
his little elves were brought to tears. This brings the true meaning of
Christmas to our family and has brightened our season this year.
This year has been an eventful one for all of us to say the least...
We rang the New Year in last year at the Stottsville Inn where Dylan had his
own personal pianist for the night! Bill Handy was kind enough to donate
his band's services for our Irish event at the Moose this year also.
We took a road trip to see LeAnn Rimes in person at Niagara Falls Ontario
during a blizzard. He got to meet her two other times in Baltimore and
Reading where she wore his bracelet during her concert performance. She has
touched our lives immensely!
Daddy, Dylan, Pappy and Nana Mo had the opportunity to visit New Orleans
(PRE-Katrina) for the annual Tay-Sachs Conference. Mommy was in the
hospital and they all flew home early to welcome his baby brother Brady
Dylan. Brady caused Mommy some hardship after trying to arrive at 30 weeks
so we were on bed rest which only lasted five more weeks! We are happy to
tell you that he is a healthy, bouncing baby boy!
Dylan met superstar and World Series Champ Johnny Damon and was escorted by
the Red Sox Staff right onto the field at Fenway Park where we visited the
Green Monster close up! Our golf outing was a great success again this
year and we were on tv several times to promote the foundation. Dylan's
billboard is still up in Bristol, PA if you have time to check it out over
the holidays, it's the most good looking sign around!
We took a friend of ours that we met in New Orleans to a Yankees game at
Yankee Stadium. Stewart Altman has Late Onset Tay-Sachs Disease and he has
touched our lives even though he is a Yankee fan :) Stewart has a Canine
Companion named Kien who is a Red Sox fan we understand and his wife Lorie.
We all got to visit Monument Park to pay respects to the players who have
made history with the Yankees and Stewart was very touched to be treated
like royalty by the Yankee organization.
By the way, don't think that we are planning to root for the Yankees just
because Johnny signed with them, we're just the Fenway faithful disapponted
that he abandoned the Sox! Sorry, Stew, Blaise and Uncle Vince! At the
game, we also had the privilege of meeting two special angels with CP from
Massachusetts, part Yankee fans and part Red Sox fans. They sat in the
special seating area with Dylan and have been inspired by him ever since!
If you log on to Dylan's website and visit his Guest book they
are not difficult to detect...BECKY AND LIZ WARREN have been keeping tabs on
him daily! Jenna Procyk and Ginger Patterson we can't forget you, your
heartfelt words are read out loud to Dylan daily!
Dylan has had a signed game ball and helmet from the Boiling Springs
Football Team as well as the Downingtown East Cougars. We were proud to
follow both team's accomplishments and thank them for their support of
Dylan's battle with TSD. Halloween was a treat with our little cowboy and
Indian duo! We enjoyed just walking the neighborhood to distribute
bracelets to all of our trick or treaters. Then, cousin Ben arrived in
November just before Thanksgiving. He is very cute! And, lastly we we were
thrilled to celebrate Dylan's fourth birthday with Santa & Mrs. Claus and
Elmo. What a bitter sweet one it was but he amazes us even more every day!
CN8 News was out on his birthday to interview him and the story aired on
Thanksgiving Day. His ad also appeared on the Weather Channel for the month
of November & December.
We are thankful to have nursing care almost 16 hours/day now to help us keep
up with our schedules. Nanny and Pappy are still over daily; they take
turns spending the night so that a family member is always with Dylan
through the night. Dylan is on some pretty potent medication for comfort
which is our ultimate goal at this point. It is extremely difficult to
watch him suffer and to standby helplessly until it subsides. We are happy
to have friends and family nearby to provide emotional support for us and
thank them for cooked meals, Christmas decorations, cleaning, laundry duty,
etc. These are times we would rather spend with Dylan and it is only
possible with your help! Until last weekend, our house looked like the
Kranks' Christmas, we were the only house on our block without a light
outside as if we were protesting this year. Thanks to Aunt Toni, Aunt
Rosie, Aunt Lolly and cousin Tina... our house looks more festive. Marie
Romanoski came to visit one day just to wrap some presents for me and that's
the furthest I've gotten since she left! Nana and Grandpop have been busy
little elves making trips to the candle company to fill our last minute
Christmas orders. Grandpop is recovering nicely from his hip replacement
WE ARE ANXIOUSLY ANTICIPATING OUR VERY OWN CANDLE FOR DYLAN! WE NEED YOUR
HELP! We are having a contest to NAME THE CANDLE, CHOOSE A COLOR AND A
SPECIAL SCENT THAT REMINDS YOU OF DYLAN! Submit your ideas to me so that we
can make a decision and get them poured soon. Dylan's bears will be
arriving shortly also and his pins are a hot item now too!
I also want to recognize Michael Wilkinson, a 9th grader from Downingtown
who chose Dylan as his new mission in life and his school project. Michael
helped me stuff and stamp Christmas cards this year so I can send them out
in time...Thank you, Michael- you are an angel in disguise!
Sorry for the lengthy email but we wanted to recap this past year's
activities with Dylan. We look forward to many more years of celebrating
his life and remembering his legacy. It is very evident that he has touched
the lives of so many people without ever speaking a single word. He will
remain in our hearts forever I am so sad to tell you that I believe God
will be calling him home very soon, his job here is just about finished.
Most importantly, we ask for your prayers at this most holy time of year.
Dylan's health is starting to fail and hospice cannot guarantee that he will
make it through the holidays. We are quite certain that he is part angel
and part Energizer bunny! He just keeps fighting and fighting and
fighting...our Christmas wish this year is just to be able to hug and
squeeze him every moment we possibly can. If love was the cure for
Tay-Sachs we would have a cure long ago!
May God Bless and keep you all, have a very Merry Christmas and a safe and
Happy New Year! As for us, we will take one day at a time and continue to
The Manning Family
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