Please consider purchasing a shirt in memory
of our daughter Fia. March in
Trisomy Awareness month. Many times there
are needs that insurance companies do not cover..in our case they wouldn't cover
Fia's hospice care. This can put a HUGE burden on parents and families that are
beating the odds of a diagnosis of Trisomy disorders and making the most of
52 Journey interview Janelle and Michael Hennessey, founders of the
Ironmanforkids foundation. Watch this
interview of this amazing couple and their passion for kids with Trisomy. Get
inspired by this couple who reached out to help a community they had no
connection with simply because they felt they needed to, and listen to the
amazing ways in which they have found to bring awareness and help to people with
Cliff was sharing information with a co-worker about
Faith & Trisomy awareness month and she surprised him by making awareness
ribbons which several people are now wearing in his office. Also, Cliff
ordered 100 postcards with a pic of Faith and information about trisomy which he
mailed out and has handed out at the OSU campus where he works.
Texas, Feb. 28, 2009 1st SPIN to JOY
event that our awesome Michael from IRONMAN for KIDS is putting together.
They have also informed us that they are going to present
Natalia a Tandem bike! I'm thrilled for many reasons. It was a great way to
get up, out and enjoy life again with Natalia along with us, and it will also be
a great way for her to also get some exercise as her pedals move along with
mine. When she is tired, I am able to disengage the peddling on her end. So its
a win, win for both of us. Often as these kids get older, if not using their
legs, they tend to atrophy... Having a bike like this will help both of us to
get the suggested exercise that everyone and typical kids/families enjoy. PRESENT SPIN TO
JOY Active Giving FUNDRAISERS
Cuyahoga Falls, Ohio (OH) - March 12th, 2009
Sarah Schrag, mom to
Anna Louise Will be organizing her local
MOPS (Mother's of Preschoolers) meeting on March 12th to include information
about children with special needs. They are having a speaker who works in the
school system as a parent advocate and helps parents find and utilize resources
available to their children - invaluable! We will also be completing a service
project led by Sarah.
They will be making fleece blankets (hand tied) to donate
to a local hospital in memory of Anna Louise and to promote Trisomy 13
Also, Sarah has created a business ~
B is for Baby Ltd.
"I have created a new small tag blanket with 13 ribbon tags. I will be donating
some of these to the hospital and would like to make one available to anyone
newly diagnosed with T-13 I will also offer them for sale to anyone who wishes
to purchase one for a sibling or a friend."
Jefferson City, Missouri (MO) - March 8th, 2009
Rachelle Glavin, mon to Hailey (add prenatal link here just sent you the story)
March 13 is National Trisomy 13 Awareness Day and to help raise awareness in our
community and for families that feel they are alone, we have shared Hailey's
story with the Jefferson City News Tribune. The article will be ran in this
Sunday's paper, March 8th, to reach as many readers as possible.
National Observances - Healthfinder.gov March 1 Ė 31
Trisomy Awareness Month
Support Organization for Trisomy 18, 13 & Related Disorders
2982 South Union Street
Rochester, NY 14624-1926
(800) 716-SOFT (7638)
(585) 594-1957 Fax
Contact: Barb Vanherreweghe
3-17-09 I put together
an information sheet for our friends/ family....I shared it
on email and asked everyone to pass it along to their friends,
family...I had a lot of responses so I feel good about it!
Proud and honored Mommy of Conner, our curious 8 year old; Rylee,
our smart-n-sassy 3 year old; and
Emma Leyce our golden-haired cherub.
a free video montage at OneTrueMedia
for your child - add as many photos or video clips as you like
and your favorite song. Celebrate your child's life and create
a personal message to all who might view the presentation.
If We Hold On Together Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.
Used with permission.
All material on this site reflects our personal journey with raising a Trisomy
13 (Patau Syndrome) - child. It is not meant to replace any medical advise of a professional
familiar with your specific condition. The personal journeys of any parents on
this site are only their opinions and their own journey with having a Trisomy 13
child. You should consult with your own physician or other medical professional
regarding the opinions or recommendations expressed within these pages as to
your own child's symptoms and medical condition.