Hi everyone!
I hope you enjoyed your weekend and that the Easter Bunny was good to you!
* If you haven't checked the website in a while, the pictures of our St.
Patrick's Day event are now ready to view. If you took any pictures, please
send them to us so we can add them to our collection. The night was a lot
of fun and a huge success! We want to extend a special thanks to the Triple
Play Band and the Cara School of Irish Dancing for dedicating their time and
talent to Dylan for such a worthy cause. We hosted almost 225 people at the
Coatesville Moose to spread the word about the risk of Irish Americans
carrying the Tay-Sachs gene. For those of you who were unable to attend,
the carrier rate is 1 in every 50 Irish!
* Two years ago today our lives were changed forever...it has been 2 years
since the day we took Dylan to the eye doctor and discovered the cherry red
spots on his retina (an indicator of Tay-Sachs). It is hard to believe that
two years have passed us by already. Over the course of time, we have
experienced so much heartache but also have met so many wonderful people to
encourage us along the way. We have been slowly adding poems and beautiful
thoughts to Dylan's website from those of you who can't sleep at night
thinking of the right words to say. One piece in particular I would like to
share with you was given to us by a woman who was a perfect stranger to us.
She happened to purchase one of Dylan's bracelets at Wawa and after going to
his website she shared this poem with us. She has held onto it for 25 years
looking for the right family to give it to and she said that Dylan was the
one waiting all this time to receive it...you'll see why after you read it
(SEE BELOW). Thank you Pam Miceli for your kindness and for supporting our
family as a total stranger anxious to lend a hand!
* As most of you know, we are expecting Dylan's baby brother soon...maybe
even sooner than we thought! Mommy spent three days in the hospital trying
not to deliver the baby who is almost four pounds now. The doctors gave him
steroids to make his lungs nice and strong just in case he decided to arrive
anyway. Fortunately, we were sent home Saturday night to spend Easter
Sunday at home and the baby has decided to get comfortable again! Say some
prayers that all goes well. Mommy is on strict bed rest to prolong the big
day so the next few weeks will be pretty challenging for us to say the
least!
* This March we also attended a special event for Kyle Klock (Tay-Sachs
angel) in Hummelstown, PA. We had the chance to meet two other TSD families
while we were there, the Wivells whose 11 month old daughter Lacie was
diagnosed in November and the Hoffmans whose 4 year old daughter was
diagnosed a year ago. The pictures are on the website under "Milestones"
2005- Kyle's 3 on 3.
* Dylan is holding his own at this point. He continues to gain weight on
the feeding tube and has therapy three times a week at home. He is now 36
pounds and 39 inches long, growing like a weed! We've called hospice care
in to monitor him once a week and to guide us through this difficult
process. He still experiences quite a few visible seizures throughout the
day but for the most part, his electrical seizures are not apparent. We had
him in Manhattan last week at NYU to evaluate his activity but we are still
seeking other treatment options for the symptoms. He began taking a new
drug almost a month ago to help slow the progression of the disease and we
are hoping this is the answer to our prayers! While we were in New York
City, he had the opportunity to visit the world famous Dylan's Candy Bar
store...you can view pictures on the website soon!
* Other upcoming events: The Moms Club of Honey Brook is hosting a
walk-a-thon in June 2005. To participate, contact Meredith Zolty at
mzolty@ptdprolog.net. Also on June 17th, the Boiling Springs High School
Football team is hosting a charitable golf outing for Dylan in the
Harrisburg area. They are looking for interested golfers and corporate
sponsors for the event. Please contact me if you need more info. Dylan's
2nd annual golf outing is set for Monday, September 12 at the Honey Brook
Golf Club. If you are interested, please make sure you are on our mailing
list to receive further info.
* Ongoing fundraisers: "Just Believe" Ribbon magnets for your vehicle
have
now arrived! You can purchase them for $5 each and promote our website to
educate the public about Tay-Sachs. Our "Just Believe" bracelets are still
going full force at $2 each. Dylan's Heavenly Delights cookbooks are still
available for $15 each with lots of yummy recipes. Blue Mountain Candles
are available for $10 each. Order forms are on the website.
* Our new brochures are finally printed and they look terrific thanks to
Renee Scamuffa's heart and dedication to a perfect little stranger that
simply touched her heart! If you weren't at our Irish event to receive one
and you are interested in passing a few around, let us know! We also handed
out a small task at the event to everyone in attendance. We challenged the
crowd to distribute a campaign letter to their friends and family, out of
towners in particular to spread the word about TSD and to help raise money
even faster for a cure. For a copy of this capital campaign letter, please
email your request and we will forward it to you to photocopy and
personalize!
* Brian also challenged our guests to live every day like they were dying
and to appreciate every day to the fullest. After a very emotional
presentation, we've been told that this event was the most meaningful and
touching we've ever had! Dylan is truly our hero and we receive strength
from him to carry on his mission.
POEM PRESENTED TO DYLAN AT THE IRISH EVENT (WRITTEN OVER 25 YEARS AGO)
"HEAVEN'S SPECIAL CHILD"
A meeting was held quite far from Earth
"It's time again for another birth,"
Said the angels of the Lord above.
"This special child will need much love.
His progress may seem very slow,
Accomplishments he may not show.
And he'll require much extra care
From all the folks he meets down there.
He may not laugh or run or play;
His thoughts may seem quite far away.
In many ways, he won't adapt,
And he'll be known as 'handicapped'.
So let's be careful where he's sent.
We want his life to be content.
Please, Lord, find the parents who
will do this special job for you.
They will not realize right away
the leading role they're asked to play,
but with the child from above,
comes stronger faith and richer love.
And soon they'll know the privilege given
in caring for this gift from heaven-
Their precious child so meek and mild
IS "HEAVEN'S VERY SPECIAL CHILD."
THAT'S ALL FOR NOW! GOD BLESS YOU ALL!
Sherri, Brian, Dylan and Baby Manning