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Trisomy 13 - Patau Snydrome - Photos, Support and Resources

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LivingWithTrisomy13.org

SOFT
(Support Organization for Trisomy 13, 18 & Related Disorders)
International Conference

July 23 - July 26, 2009 Roanoke, Virginia
Click here to visit their web site

Current Prayer Requests & Needs

Please join us in praying at 3:00 pm (central time) for our beautiful children affected by trisomy 13, other genetic syndromes, as well any birth defects. For those of us who are Christian, 3:00 is known to be the hour of mercy. We ask God to shower his mercy, once again as he did at Calvary, upon our children, and all children - our families, and all families.

The 3:00 hour is also special because "3" is the special genetic signature for all persons with a trisomy syndrome. We can join together at 3:00 in our hearts, wherever we may be, to express our gratitude for having been blessed with our special children in a prayer of praise. We can ask for blessings for our children, all children, and one another at this time, knowing that all over the world other parents are praying too. We share a communion of solidarity, a vision of hope, and memories of beautiful babies and children.  
Our prayer:

Thank you dear Lord Jesus, for the gift of our children. You have graced us beyond our comprehension. Please guide us in the care of these Treasures. Give us wisdom to make the best decisions for them. Give us patience and charity so that we can advocate for your precious ones. Give us fortitude, so that we will not give up before it is time. Give us peace when our hearts our troubled with worry. Bless our children with all that they need in this life.

And for our children who have gone to be with You, thank you for holding them in eternity as tenderly as we held them on earth.
 

Bless all of the little babies in this world, each is a special gift to us whether a part of our life for merely a minute or for years. Each gives us a special joy, each shares their special talents. May each of them be protected by angels, may each of them be given a chance to reach their potential. May health providers be reminded that all life has value, each life counts and all parents have the right to choose the chance for life for their child no matter what the diagnosis. The only one that knows what is to be is God, and he in his time reveals his plan to us even though we may not understand it at the time.
S. Hutchinson, Iowa

Please remember the following needs in your prayers.

April 12, 2009
Due to some complications with mommy's blood pressure, we will be induced on Monday April 13, 2009. Please keep us all in your prayers and that our angel Evelyne will be able to stay with us as long as God wills. Visit our Caringbridge site  for details!
I will update tomorrow as soon as we know.
Thanks Melissa Gordon
neilandmelissa@comcast.net

March 31, 2009
Taylor James Passmore age, 16, passed yesterday in his sleep. He had a severe bought of Pancreatitus in October 2008, he had his gall bladder removed in January 2009 and never returned to his regular eating habits, so was fed his through his feeding tube intermittently...via Ngtube. We were in contact to get a g-tube inserted but had not yet done that. He was getting weaker over the last week and was not his active self.
Yesterday we got him up and had a long time loving and holding him, put him on the floor to play and he wanted to sleep so I put him back in bed and he passed in his sleep several hours later.
Please keep our family in your prayers, thank you.
Linda

3-31-09
Phoebe was admitted to the hospital for a UTI, while this is now gone she was starting with pnneumonia from an x-ray. Please keep her in your prayers.

3-31-09
Natalia has had some sort of nasal infection for about 2 months. She’s been through two rounds of antibiotics and also had a swollen check for a bit. She seems to be a bit off balance, and sounds are bothering her at school, Please keep her in your prayers so they can find the cause of the sinus issue.

3-29-09
Mitchell is up and healthy now-thanks for the prayers. However, I'm sure you've seen in the news about the Red River Flood in Fargo,ND and Moorhead, MN. We are in Moorhead. Right now our house should be fine. Please pray for our community and that we stay safe and dry. Thanks Katie Cragg

3-29-09
Hi Everyone! Just wanted to update everyone on the murmur they found in Grace's heart 2 weeks ago. Her mitral valve is too thick and is leaking blood back the wrong direction. More importantly, she has coarctation of the aorta. Her aorta is too narrow in one part, causing high blood pressure and most of her blood going to the upper parts of her body. Not much goes to her lower body. This Monday, March 30 they will put a catheter in her leg artery and go up to her aorta where they will stretch out her aorta with a balloon. They say this is a safe and simple procedure. She will be in the hospital overnight. Please pray that Grace will do well through the procedure, that her artery is strong, and that the procedure will be successful. Otherwise they will need to possibly do surgery. Please also pray against the risk of aneurisms developing after the procedure. Thanks so much, Cami Lundt, mom to Grace Lundt , Full T13 and almost 2yrs. old (on April 10!!)

3-29-09
Just thought you would want to know that Penny, mom to Devon was in a car accident yesterday on her way shopping. Her car is non drivable, the front in is smashed in. The airbags went off. Luckily there was a policeman behind her that saw everything. It was not her fault. They took her by ambulance to the hospital just for precautionary reasons. They did X-Rays on her that showed no broken bones, but she is really sore and hurting all over especially her neck and head and shoulders. So in the meantime she is without a car, don’t know how much damage there was to it. Just thought that you would want to know. Say some prayers for them. Luckily she is off from school this coming week, but they are suppose to take Devon to the genetic clinic tomorrow, but I don’t think that is going to happen. Donna

3-29-09
Please keep in prayer Janelle Hennessey, wife to our Awesome Trisomy Awareness Advocate Michael with Ironmanforkids.org Janelle miscarried her child last night, this is the second since Thanksgiving. Its not an easy time for them. Please lift them up in your prayers. Thank you. And God Bless, ThereseAnn

3-17-09
I have a prayer request. Mitchell has been sick wit RSV. He was in the hospital for a week and now is home still trying to recover. Please keep him in your thoughts and prayers
that this nasty bug passes soon. Thanks-
Katie

3-4-09
Hi friends, please pray for Kyle as he is going in to hospital tomorrow the 5th of March to have his hernia repaired and also a LLB of his windpipe, please pray that he will be ok with the anesthetic as he doesn't cope very well with it and that he will come threw it ok. Kyle was meant to have the operation 3 weeks ago, but the hospital cancelled due to no beds being available in intensive care, please pray that my precious boy will be ok.xxxx thank you, Kerryann.xxx

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Living with Trisomy 13
Focused on prayerful support and gifts of love to those touched by a Trisomy 13 child.
Inspired By An Angel
Attn: LivingWithTrisomy13
15802 Springdale St.. #68
Huntington Beach, CA  92649

info@LivingWithTrisomy13.org

 

 

Text and graphics © LivingWithTrisomy13.org 2005-2009 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.
 
*Disclaimer
All material on this site reflects our personal journey with raising a Trisomy 13 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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