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Trisomy 13 - Patau Snydrome - Photos, Support and Resources

  Embracing Life - One Moment at a TimeTM


This is an archive of the LivingWithTrisomy13.org site (2005-2010) for current information please see:

please email Vanessa@livingwithtri13.org

Trisomy13 Awareness

The Living With Trisomy 13 Community
Supports Ironman for Kids

 Michael as he travels the world to raise awareness for Trisomy Awareness.


50 in 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 Trisomy children.


Another Ironman For Kids Event - Wild Flower Kids Run Saturday, May 2nd - at the lovely San Antonio Botanical Gardens.


Our foundation seeks to raise awareness for trisomy by racing endurance events across the globe. A chromosomal disorder is not a death sentence but a rewarding challenge to embrace compassion, love, and hope for a unique little life.

Across the globe, there’s a forgotten and lost tribe of people. They’re the children and families of children who have Trisomy 13 and 18. Their children have been given a death sentence. This tribe is hurt and mostly alone, waking up to face death and the fear of death.
For those in this tribe, they learn not to live in the past or the future, but in the now. They learn how to be. They must be.

Their motto can be summed up in 3 “B” words: (tri be). Battle. Breathe. Believe.

Battle - against pain, fear, death, against the very cells in a body. Against anger. Against ignorance.

Breathe - trisomy babies are supposed to forget how to breathe and die. As a parent, you never take a breath for granted. And as a parent, you learn to just breathe. You keep thinking you can do something - you can’t. In fact, you can do nothing. So, as Robbie Seay the singer says: breathe out and breathe again/know that life is hard, but it’s worth breathing.

Believe - is all we can do and the best we can do. Believe that life is precious. Believe that today is a gift. Believe that there is eternal life for the redeemed. Believe that I have a Savior friend who will see me through this. Believe that there is strength in Him.

Our TRI-BE http://ironmanforkids.com/  theme was created by a dad living with a trisomy 18 daughter, Zoe.
Ironman for Kids Foundation is challenging you to a spin-a-thon.
Help us continue our work and purchase special needs bikes for
some incredible kids. Save the date and start forming your teams!!
Ironman for kids - helping to raise Trisomy Awareness - Michael Hennessey completed his 15th Ironman competition in a calendar year, passing the current Guinness World Record. VIDEO Channel 5 KPHO.com Click for Video
PRESS RELEASE Nov. 24. 2008
Triathlete Michael Hennessey Completes 15th Ironman Competition
November 18, 2008


Blessings to everyone today! We're excited that we are on the cusp of reaching our initial goal of breaking the Guinness World Record for most Ironmans (14) in a year. Several trisomy families are going to be there with us in person at IM Arizona to spread more awareness for these precious babies and children affected with trisomy and their courageous families.

In honor of this festive occasion, we are launching our Trikes & Bikes for Trisomy. Please see attached file below for information on this wonderful new adventure. So many children long for a bike for Christmas and these differently abled children are no different. Please generously consider being a joyful part of their lives. We know it's a lot of money in these uncertain times but it will make a world of difference in their lives. For these amazing tandems you could even "tandem" up with friends and families to be able to help us purchase one.

Thank you all for your generous consideration and your never ending support of our arduous efforts on behalf of those without a voice. May God bless you all for your generosity.

+Kindest regards,

michael hennessey
ironman for kids foundation
9-11-08 Washington Post By Michael Gerson Wednesday, September 10, 2008; Page A15
Trig Paxson Van Palin -- pronounced by his mother "beautiful" and "perfect" and applauded at center stage of the Republican convention -- smashed the chromosomal barrier. And it was all the more moving for the innocence and indifference of this 4-month-old civil rights leader. LINK to FULL TEXT
Thursday, 21 August 2008  Running for others - Video Some people run the Penticton Ironman triathlon for more than the challenge and glory.
Tuesday, August 26, 2008 Triathlete aims to break Guinness world record  By Allison Cano/Special to The Penticton Herald
Aug. 20, 2008  Ultimate Ironman Pushes Himself to Help Ill Kids.
8-8-08 Triathlete for Trisomy: Man Defends Severely Disabled Trisomy  Lifesite - Pittsburgh, PA, USA
7-14-08 Click for photo at Frankfurt 2008
7-4-08 batiansila blog Highlights Michael Hennessey & his Ironman for kids foundation

Off to Germany/Austria    Posted by ironman under: Blogroll .
It's time to pack the bag & bike box again. Team-Trisomy is off to Ironman Germany to race this Sunday. Luckily there were only 450,000 spectators at last's years race so I won't be lonely. There should be lots of action with all the world's top pro's duking it out. In 2007, two pro women raced neck and neck for nine hours. Please tune into to follow all the action. 
The travel plans are quick and fast. Leave Friday, arrive Saturday and register, rest some, and then race Sunday. It's a tough trip but less time away from the family and work. After collecting myself, then it's some time with old friends from my teaching days in Mexico and off to Ironman Austria for some R&R.   More>

7-3-08 --Please Say a special prayer for Michael and his IRONman for Kids Mission. Today Michael is waiting to hear on a possible sponsor to his IRONMAN mission. Please lift Michael and Paul up in prayer that this will be the next step forward for his mission of hope for our trisomy families globally.
TV NEWS!!!!!!!
Michael Hennessey TEXAS IRONMAN attempting to set a worlds record in 2008 for TRIsomy Awareness 
To read the article and view Video click here KXYL.com
6-26-08 Can You Race several Ironmans in a Year? LISTEN NOW
Michael Hennessey is on a mission to race several Ironmans this year in an effort to raise awareness about a chromosomal disorder in babies called Trisomy. Today on Endurance Planet we hear about the amazing effort. ... Main site click here EndurancePlanet.com Interviews    
Ironmanlife: Michael Hennessey's Mission
Kevin Mackinnon profiles the man behind Ironman for Kids

Published Friday, June 13, 2008
Read the March Ironman for Kids Newsletter featuring Trisomy Awareness
Michael’s IRONMANFORKIDS.COM first TV interview

You can help IRONMAN FOR KIDS raise funds just by using GoodSearch for your Search Engine needs this year.

Ironman for Kids

Bringing Hope ~ Celebrating Life

Michael Hennessey–husband, father, regular guy with a zeal for the Lord, will attempt 18 Ironmans across the globe for Trisomy Awareness!

Please go to Michael’s site and read all about his passion for our very special kids.
Home page Ironman for Kids http://www.ironmanforkids.com/
About Michael
Right now what Michael needs most is PRAYERS. Please pray that good sponsors will come their
way, so they can help children’s organizations.
His Race Schedule/ Sponsorship

Here is a message from Michael:

Dear Supporters,

They say doing an Ironman is the pinnacle of endurance athletics and in particular that the Ironman is all about overcoming adversity. The most vivid image that comes to mind is Dick & Rick Hoyt. The father that loves his physically challenged so much that he pulls, pushes and drags his son through the lava fields of Hawaii so that his son can feel the exhilaration of finishing an Ironman. Parents and children living with trisomy 13 endure plenty of adversity each day and this special quest is for them.

Racing an Ironman is a very spiritual experience but just a means to an end. Sadly, Ironman has come to reflect individuals conquering something much bigger than themselves on their own. Only God’s grace is sufficient for us. We are not trying to conquer the world. Christ has already done that. We simply want to give back to those in need. We have been blessed with six healthy and vibrant children and felt called to do something that would witness to the value of life. The beauty and affirmation of human life that flows from the living with trisomy 13 group fit perfectly. The value of life fully represented here is why we want to dedicate this special mission of mercy to them.

What can we do as a Community to support Michael?
PRAYERS will help bring everything together. What Michael needs most is a SPONSOR or many SPONSORS to help this all come together. If you know of any
organization who would like to help sponsor him, please contact them and pass on this wonderful mission of love.

What are we hoping to do as we support Michael and follow his journey around the world in 2008?
This will be fun and very exciting following and watching his events. We have families around the world that have been touched by Trisomy 13. We’ll do our best to help support him at each Ironman event.

It’s taken me a few months to ponder this as I know many will say who is he? Why should we support him? What’s in it for us? Why do we need to help him?
As I myself have thought about all of this, I see Michaels passion for kids as not much different than our own. He is on a quest, a journey and is going to live from event to event...hoping all the right doors open for him to travel through each one. What he is doing will in turn, bring awareness to our Families Journey’s throughout the world.

He feels a call from above to help organizations such as ours. With our prayers and support and help if possible in getting some sponsors this will
become reality. With this new worldwide awareness towards our LWT13 community, I believe 2008 will be the year we can get our Non-Profit
501c3. This would be a wonderful blessing.

If you know of any large organization or business that would like to be part of this amazing feat...please contact Michael
Also feel free to call or email Michael if you just want to get to know him or his family better especially with any questions.
Contact http://www.ironmanforkids.com/?page_id=19
email: michael@ironmanforkids.com

Ironman for Kids
833 N. Saint Mary’s Street
San Antonio, TX. 78205-1332





All text and graphics LivingWithTrisomy13.org 2005-2010 - all rights reserved
Use prohibited without permission
All information found on this site was submitted to us directly by the families
and used on this site with their permission.

Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela Sullivan 2004, used with permission.
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.

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