Good morning, everyone!
I wanted to fill you in on the latest of Dylan's experiences and just how
wonderful they were!
This weekend we took a road trip to Niagara Falls, Canada as part of Dylan's
birthday gift this past November (thanks to all of you who so generously
donated towards this). NOTHING was going to stop us, not even the blizzard!
We took off after daddy finished work on Thursday and headed North because
the snow was supposed to be lighter up that direction (not true, by the
way!). After an almost 12 hour trip we finally arrived at the Niagara Falls
Sheraton around 6 in the morning! We slept for a few hours and then ate
lunch at the Hard Rock Cafe where the servers were very interested in Dylan
and his "Just Believe" bracelet campaign. So, why would we venture up north
at this time of year you may be asking??
Well, Dylan got to attend a sold-out concert to see LeAnn Rimes and better
yet...he FINALLY GOT TO MEET HER IN PERSON!!! The entire experience was
wonderful and well worth the drive to get there! I have attached some
pictures but if you are unable to open them, they will be up on the website
shortly. LeAnn is a fantastic person and was so interested in Dylan's
story! We explained to her that ever since he was a baby and very colicky,
her music was the only antecdote available to soothe him and it REALLY
WORKED! So all of this time, we wanted to meet her and thank her for
soothing him through her music. LeAnn responded by saying, "I was colicky
myself from what I was told and I am so happy to be able to make him feel
better!" After giving her a cookbook and a "JUST BELIEVE" t-shirt, she took
a picture with us and signed Dylan's ticket as a momento.
But that's not all you see, we requested that we have a picture of Dylan by
himself with her after her fans has dissipated and she overheard our
request. She came directly over to Dylan's stroller and said, "No, let me
come to him"! Brian took the opportunity to explain our "Just Believe"
bracelet campaign and I of course had my camera in hand every second!
Before we took the picture, she insisted on putting on the bracelet first
and was so happy to have a new one to add to her collection. Brian noticed
that it was practically falling off of her wrist and quickly grabbed mine
right off of my wrist!! I was a little bit upset with him because I haven't
taken it off since the day we got them in Oct! But hey, she may be the only
exception to the rule...LeAnn Rimes is now wearing MY bracelet!! And she
gave her adult size back to Brian when her husband quickly grabbed it and
asked if he could wear it instead! How cool is that???? This was AN
UNBELIEVABLE EXPERIENCE for all of us, one we will NEVER forget!!! In the
midst of everything, Brian was also able to slip in the letter he wrote to
her about the possibility of performing a benefit concert for children of
genetic disorders which we will wait to hear about. For now though, we know
that we have done EVERYTHING we could to make that happen and we are
thrilled to share our memories with you!
We took him to the Rainforest Cafe where he sat through many a thunder storm
and monkeys/elephants/eagles doing their thing! We walked for a very short
time through the -6 degree temperatures to the Hershey Canada store where
the employees there took Dylan's story to heart and made him a special dose
of iced hot chocolate to taste...he LOVED it! They all promised to write to
Oprah before we left and they gave him a special Hershey bear to cuddle
with. Our hotel room was beautiful, we had a gas fireplace and a perfect
view of the Falls! We also enjoyed a garden whirlpool tub surrounded by
mirrors where Dylan fell asleep while bathing with his mommy watching
cartoons on the in-bathroom tv!
Saturday we took him to a Butterfly Conservatory where the butterflies land
on the guests as you tour through. This was also very neat to experience,
one landed right on Dylan's face! The pictures of this will be on the
website soon too. Our trip home was much better, we even got to stop in to
see his Nana in the nursing home when we drove through Pottsville. She was
happy to see him and proud to introduce him to all of her friends!
Now, it is on to seriously planning the Irish Event which is coming up! If
you haven't sent in your response, the deadline is Thursday. The event is
on March 18th at the Coatesville Moose from 7:30 to 11:30 and is sure to be
a great night out! You can contact Maureen if you are interested or for
more info at (610) 524-0537. Incidentally, we are making a candle trip this
week for any of you who are running low and would like to re-order, contact
Maureen also!
Dylan's February was a very busy one. We haven't even mentioned attending
the Josh Groban concert at Hershey's Giant Center. We felt compelled to
attend and personally deliver a bracelet to him because he performs the song
"BELIEVE" from Polar Express and thought that this could be the chance to
tie the "JUST BELIEVE" campaign with a professional singer's help in finding
a cure! We know for sure that Josh has received his bracelet and was
inspired by Dylan's picture but we haven't heard from him yet...we are not
giving up hope!! We also visited the school where mommy used to work before
I was born (Church Farm School) where we conducted a presentation for the
students and staff on Tay-Sachs Disease and introduced him to everyone who
has so ambitiously been packing his bracelets for us (50,000 of them so
far!). It was great seeing everyone that has been there for us since the
day he was diagnosed and the students are so drawn to him which is great to
see! We also attended a surprise 30th birthday party for his Uncle Kenny
who turns 30 today.
OTHER NEWS...Mommy is now growing large at 8 months pregnant! The baby is
kicking like crazy and reminding us every day of the miracle we are about to
share this Spring! Dylan will be appearing in the Daily Local News next
Monday in the "HEALTH" section. We will be attending an event this weekend
for a little boy who lost his battle with Tay-Sachs in Hummelstown, PA.
His family wanted to share a living Tay-Sachs child with the people at the
event. The 3 on 3 basketball tournament is still in need of volunteer
referees if you are available, please contact Brian at
brimanning@comcast.net. DRiB-L is right around the corner with the Spring
league beginning in March so Daddy is busy preparing the details on
registrations, etc. Dylan and his daddy along with his Nana and Pappy will
be going to New Orleans, LA in April to attend the Annual NTSAD Conference.
The MOMS Club of Honey Brook is planning a Walk-A-Thon at the end of May for
Dylan, for more info on how you can help out or participate, contact
Meredith Zolty at 610-913-6267. Our 2nd Annual Golf Outing is also slated
for Monday, September 12 at the Honey Brook Golf Club.
Dylan is growing bigger every day weighing in at 36.5 pounds and 39 inches
long he is quite a load to carry around! Fortunately, he has remained
pretty healthy this winter other than his usual "coffee percolator"
breathing sounds! He had 5 ear infections since Christmas which drove us to
an ENT specialist at DuPont but tubes were not recommended at this point.
He suffered a minor bout of pink eye in Niagara Falls but we quickly
resolved that problem with over the counter drops. He is now 39 months old
and to physically look at him, you would assume he was healthy as could be
but he is still experiencing seizure activity throughout the day, three
daily feedings through his tube and lots of vitamin supplements to build his
immune system and restore energy to his muscles. In fact, wherever we go
there is usually always one or two in a crowd that go out of their way to
tell us what a beautiful child we have! God has surely blessed us with a
beautiful boy and we are grateful for every day we have to spend with him.
He now has hospice care visiting during the week but no full time nursing
care at this point other than his pappy who stays with him four days/week to
help mommy care for him and sing "Bonanza" theme songs with him!
Occupational, physical and music therapists visit him at home through the
Intermediate Unit. Nanny comes to visit in the evenings and cooks some hot
meals and Uncle James visits often during the day to help out. Every
Wednesday he visits Nana and Grandpop where he receives physical therapy in
place of swim therapy during the winter months where his Auntie Suzanne
usually visits over lunch. Mommy goes to work one day/week for a BREAK! Go
figure!
Right now, we are watching the snow fall as forecasters are calling for
blizzardous conditions, can't wait to help Dylan make "SNOW ANGELS" in the
yard! We live every day like it's the last day and that makes a BIG
difference in a person's outlook on life and our daily activities. Nothing
else matters more to us than his happiness and comfort! I came across a
book by Tim McGraw according to his song, "LIVE LIKE YOU WERE DYING" which
has inspired us quite a bit in our mission with Dylan. If everyone lived
every day like they were dying, the world would be a much better place to
live. If there is one message I would leave with you today it would be just
that...
LIVE LIKE YOU WERE DYING!
God Bless,
Sherri Manning