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Our Address

Hope for Trisomy 13 & 18
P.O. Box 921
Springtown, TX 76082

Phone: (866)977-6637 

fax (866) 977-6637

Welcome to Hope for Trisomy
Memorial Page

As our way of thanks for their generous contributions, we present our memorial page.
We would like to thank our generous sponsors and donors.  We are grateful for every gift.

                                                             In Memory of Sloane Ramsey Remaly
                               September 30,2013 -October 2, 2013


The Walsh Family

In memory of our precious angel Sloane Ramsey Remaly. We as a family celebrate the newest member of our family, although not here on this earth for us to hold but in our hearts for a lifetime. We were all so blessed to be a part of your wonderful journey. Sloane, you have the most amazing, selfless, kind, caring, thoughtful, loving parents in this whole wide world. We came to love you through their sharing of your development and excitement to finally see you one day, We love you so much baby girl, and God Bless You.

"Those we love remain with us for love itself lives on, and cherished memories never fade because a loved one’s gone. Those we love can never be more that a thought apart. For as long there is a memory, they’ll live on in our hearts."

Jason Wilson

Jennifer Traughber

Suzanne Klauer

In Memory of Sloane Ramsey Remaly
September 30,2013 -October 2, 2013

Beloved daughter of Kelly and Meredith Remaly

                                                                        Alexis Harlow Andrews

                                                          November 8th, 2012 - January 27th, 2013

                                                                                     Leanne Oneschuk

                                                           In memory of a short, but precious life. Love, Leanne & Joe

                                                                                       Janet Bridges

                                                                        With love, Bill, Janet, and Colton Bridges

                                                                                    Laura McClendon

                                                         It was a privilege to know Alexis, she will be greatly missed.

                                                                                     Sean Fennema

                                                                                 In loving memory of Alexis
                                                                               Love Sean and Robin Fennema

                                                                                      Cindy Phillips

                                       In memory of Alexis Harlow Andrews, and to help in efforts to create awareness for families

                                                                                      Patricia Hurd

                                                         In honor of a beautiful little girl who left her family too soon
                                                                        November 8, 2012 - January 27, 2013
                                      May God Bless Mike, Gamze, and Carter with peace knowing their little girl is now in his arms.

                                                                                      Berry Price

                                                                         In memory of Alexis Andrews.

In Honor of
Avery Jackson
Suzanne Smith

Eugenio Marcos Montalvo
donation to benefit Living with Trisomy 13
Maria Marcos

Alexander Robert Willgress

Happy 3rd Birthday Alexander!
I love you and miss you so much.
Love mommy

Catherine Yvonne Messmore

donation to benefit Living with Trisomy 13
The breath you didn't take took mine away.
I miss you.
Love, Mom.

Adriana de Jesus Silva Guerra
En honor a la pequeña angelita de nuestros amigos Rosbel y Jovanna, Adrianita, quien ahora disfruta de su vida eterna,
sin dolor ni sufrimientos, junto a nuestro propio angelito Eugenio, acompañados de Jesucristo y su misericordia.
Los llevamos en nuestros corazones por siempre!
donation to benefit Living with Trisomy 13
Maria Marcos

Anna C. Ferlita
She will always be remembered and loved.
Donation to benefit Living with Trisomy 13
Debra Hammond

In Support of
the work being done at Hope For Trisomy
Robert Grogan

Alea Grace Frayer
Can't wait to meet you in heaven! Merry Christmas Alea!
Crystal Baxter

In Honor of
Jaxton Husman
who was diagnosed with prenatal Trisomy 13.
God has given Jaxton two of the most generous parents, Josh and Lisa Husmann.
Jane Grimes, Christy Rush and Cheryl Cochran

Eugenio Marcos Montalvo
In honor of my nephew, our little Angel Eugenio.
Donation to benefit Living with Trisomy 13
Maria Marcos

In loving Memory
Raleigh Grace Rebecca Jeffcoat
In memory of Raleigh Grace who was here just a short time, but will be loved forever
by her parents who have remained strong throughout this difficult journey. May Raleigh Grace rest in peace and
patiently wait to meet her parents once again and forever when the time comes.
Spencer and Katelin Milbach

Alexander Kerschbaum
Catherine & John Walsh

Jonathan Tomaschko
This is in honor of our nephew, Jonathan Tomaschko who was diagnosed prenatally with Trisomy 13.
He was born on Oct. 8th, 2009 and lived for 40 minutes until he passed in his parents' arms and went to be with Jesus.
We love you sweet angel!
Jeremy and Lindy Steindler

Baby Lucy
My loves goes to the Grogan family who shared her little angel Lucy to many people for 5 whole days...
The Lord blesses us in many ways and I feel honored to have gotten the chance to love and hold that tiny girl.
Katy Nowicki

Lucy Grogan
Happy Birthday little Lucy, may you continue to rest in peace.
Nicolette Oberst

In loving Memory
Brady McClintock
In honor of Brady McClintock for touching his parents Paul and Christie so deeply during the time they all shared.
You will always be loved and never forgotten. Raymond, Shannon, and Caetlyn Bowles

In memory of
Lilly Claire Pitchford
Happy 1st Birthday Baby Girl. We love you and miss you very much.
Love Momma, Daddy & Zoe

Molly Deetz
In honor of our beautiful daughter, in hopes of preventing any parents
from experiencing the death of their child diagnosed with a trisomy condition
Cara Deetz

In honor of
Anna Louise Schrag
of Cuyahoga Falls, OH

Donation to be put toward research
Sherry Barbiere of Willoughby, OH

In honor of
Andrew Nicholas Haas
of Chicago IL

Doris J Haas of Denver, CO
Kathy & Brian Elliott of Wheaton, IL
Mike & Sue Haas of Wheaton, IL

In honor of
Connor Andrew Martin

Deborah O'Neill

In honor of
Ethan Robert Hoff
of Independence, MO

Ashley & Keith Hoff
William and Martha Behm
Joel and Kim Hoff
William & Joanne Behm
Scott & Michele Gifford
Patsy and Mike Behm
Kelly Tatreau & Brett Smith
Scott & Kathy Daniel
Kathy Keady
Rhonda & Dick Hockinson
Sherry Viani
Don, Cameron, and Jourdain Karnish
Rod & Gail Bates
Brad & Becky Hoff
Nancy Ossino
Debbie Miller
Pam & Craig Mc Cright
Audrey Jeter and Charlie Boye
Glen, Lois, Andrea, and Ashley Clatterbuck
Barbara Marchese
Kay John
The Union Pacific Railroad (Omaha, NE)
Travelex Insurance (Omaha, NE)
St. Vincent de Paul Elementary School (Omaha, NE)
International Bortherhood of Electrical Workers (Omaha, NE)

Jo Ford of Suwanee, GA
Donation to benefit Payton's Bears

In honor of
Joshua James Jorgensen
of Houston, TX
Parents James and Natalie Jorgensen of Houston, TX
Grandmother Brenda Bush of Houston, TX

In honor of

Edmond John Elias
Erin Weiss

In loving Memory
Alexander Robert Willgress
Happy 2nd Birthday Alexander!
I love you and miss you - love, mommy

Harry Benner

In honor of
Harry Benner
who has the most courageous and loving parents a boy could ever have.
Many blessings and prayers to you.
Leigh & Jim

We are praying for Harry and his family.
Suzanne and Jonathan Philipsen

Harry Philip David Benner
In Honor of Harry, whose life touched so many.
Tina Atkinson

In memory of
Harry Benner
Tate Garey

Harry Philip David Benner
We pray for peace of God to reign in the lives of all of those moving through the painful circumstance
of having a Trisomy 13 baby, a baby whose life is short but beautiful, valuable, and meaningful.
Donation to benefit Living with Trisomy 13
Stephen and Jana Harmon

Harry Philip David Benner
These three remain: faith, hope and love. But the greatest of these is love.
Donation to benefit Gemma's Bears
Terry and Keeley Krantz

Harry Philip
Brenda Hickey

Harry Philip David Benner
This doneation is in the name and honor of Harry Phillip David Benner and his very brave and courageous family;
Shane, Marci and Evi. Their faith, strength and courage and trust in the lord are an inspiration to us all.
In HIS Love, The Chambers
Donation to benefit Living with Trisomy 13
Harry Philip David Benner
In Memory of Harry and Honor of his loving parents who so courageously gave him life.
God's love is ever present in them.
Janie Schafhauser

In loving Memory
Emma Grace Raulerson
Also in memory of Nora Longley, who left us too soon.
Dick and Deb Parker

Quinn Krasean

In Loving Memory of Quinn.
With deepest sympathy,
The Traynor Family

Samuel Jacobs

Samuel touched so many lives with his strength to survive,
even if only a short time, so his parents could meet him.
He was sweet and beautiful and will remain in all of our hearts forever.

Brandon & Andee Bettes

Lillian Monaghan
Happy 3rd Birthday Lillian!!

We love you!!
Donation to benefit Living with Trisomy 13
Lee & Cynthia

Samuel Jacobs

To honor the birth of Samuel
Cheryl & Steve Dixon

In loving memory

Christopher Ryan Sadzewicz
October 6, 2006

Stillborn 10-6-06 with Trisomy 13
We love you you and miss you very much.
Daddy, Mommy, Nick and Jake.

With love to
Charlie Jones
who was born asleep on 4/2/07
who sadly died from full trisomy 18
love u always charlie my angel
miss you alway
love mammy and tyler

In Honor of
Hadley Grace Dahlberg
who lived three precious days with Trisomy 13
daughter to Eric & Kendra Dahlberg,
From The Hadley Grace Dahlberg Trust, Dallas TX

Ken and Leigh Holcomb
For Leigh's birthday...
a donation to find a cure for Trisomy 13 & 18.
With love.
Your friend,

Annabelle Baumer

Donation to benefit Living with Trisomy 13



Jonathan Mark Spaugh
My thoughts and prayers are with you as we hold the memory of little Jonathan Mark in our hearts forever.
donation to benefit Living with Trisomy 13
Patricia Bennett

In honor of Payton Blomstrom's Third Birthday
From Jo Ford
Suwanee GA

In memory of
Anna Loise Schrag
daughter of Dan and Sarah of Cuyahoga Falls, OH
From Mr.& Mrs. James Barbiere, Jr., Willoughby, OH

In honor and memory of
Ethan George
from his father Sean George who runs triathlons in his honor and to raise funds.

In loving memory of my grandson
Jacob Clark Crane

born 20 years ago with Trisomy 13 to
Aimee Abbotoni Crane and Shawn Crane.
donation to benefit Living with Trisomy 13
Sharon Abbotoni 

In Loving Memory
Colin Daniel O'Sullivan

With deepest sympathy for your loss.
Pusateri Family

In Honor of
Cody Allan Lyons
The Kroger Company-CALM Manufacturing
Bryan, OH

Evan Andrew Bumgarner
Given in beloved memory of Evan Andrew during Trisomy 13 Awareness Week

Sofia Poulin and Family
Donating to benefit Ironman for Kids
On behalf of Sofia and her family in honor of Trisomy 13 awareness day!

In loving memory of
Tess Spielberger
on the anniversay of her 9th birthday.
With love,
Donation to benefit Payton's Bears
Mom, Beth, Michelle and families

For My Granddaughter
Michael J. Murphy

In loving Memory
Sophia Rose Jones-Hazledine

In loving memory of your beautiful daughter and sister Sophie on her 9th birthday.
Sophie - Thank you for continuing to brighten our days with hope and appreciation of life.
We are thinking of you and celebrating your precious life.
Eugenia and Tom Tsao

William Cole Stafford
Infant son of Trampas & Carla and nephew of Travis
Joan Bennett

In Memory of
William Cole Stafford
You and your family will always be in our thoughts and prayers.
May God bless your family.
We love you,
Donation to benefit Living with Trisomy 13
Danny and Patricia

William Cole Stafford
You are in my thoughts and prayers.
Donation to benefit Living with Trisomy 13
Love, Jean Whitfield

Donation to benefit Living with Trisomy 13
Leslie Ball 

Ava Margaret Ambrosia
Michael Ambrosia

Frederick Boyington, Jr.

You guys are always in my prayers and thoughts!
Donation to benefit Living with Trisomy 13
Angela Waters
Fredrick Jr.
Donation to benefit Living with Trisomy 13
We love you so much!
Mommy, Daddy, Fay-Fay, CJ 

In loving memory
Samuel Burger

Karen & Chris Galfano
In loving memory of your son, Samuel

Jeremiah Parker Shelby

Donation to benefit Living with Trisomy 13
Mandy, Cari, and Bonnie

All Families Affected by Trisomy 13
Arvind and Michelle Arya

Lillian Monaghan
We have been lucky enough to know Lilly and her family and keep in touch after meeting two years ago when our children shared the same NICU room and were roomed next to each other for Lillian's whole stay in the NICU. We are blessed to know her and hope to continue. We are greatful for her progress and touched by her and her family. It is a blessing to have people like the Monaghan's in our lives!
Donation to benefit Living with Trisomy 13
Tawny Gaither

Bashar and Loryn Amso

In Memory of
Kassandra Maria Hogan
Although we were never able to meet Kassandra,
she will alway be our little cousin.
Donation to benefit Living with Trisomy 13
With Love and prayers to you all,
Ted & Jan Jerry & Nancy Larry & Dee Tom & Diane

Daxx Christopher Wendland
We are so sorry for your loss.
We continue to keep all of you in our thoughts and prayers.
Donation to benefit Living with Trisomy 13
Sincerely, Judy and Brian

In loving memory
Melina Demers
In memory of our dearest little Melina Demers who left us Feb.12, 2006.
Melina you were with us for such a short time but changed our lives a great deal.
You were a very strong, couragous and loving little girl who will never be forgotten.
We love you and miss you very much,
Camilla, Cosimo and GianCarlo Zacconi

Samantha Hope Mauro
May God comfort you as you mourn the loss of your precious child, Samantha Hope.
Helen Keller

In loving Memory
Meghan Katharine
A sweet soul that touched our lives for such a short time.
Audra Parent

In loving memory
Andrew Enoch Mullinax
Our thoughts and prayers are with you,
Centdev Properties
Jeff, Dale, Ann, Katherine and Thorn

Alyssa and Luke Hannaford
Stephen White
Donation to benefit Living with Trisomy 13

Anna Louise Schrag
Sarah Schrag
Donation to benefit Gemma's Bears

Fredrick Boyington Jr.
Donation to benefit Living with Trisomy 13

In memory of
Max James O'Neil
Laura and Ronnie Gee

Honoring Max James O'Neil
Your incredible strength and courage inspires us.
We love you and are thinking of you.
Love, Michael and Amy Putney

In loving memory
Anna Louise Schrag
August 2, 2007
Mr & Mrs James Barbiere Jr. of Willoughby, Ohio

In loving memory 
Jules Kelly Dahn
Jules Kelly Dahn
Thank you for sharing your breathtaking moment with me.  What a beautiful angel.
Julie Malphurs
Neil and Sandrine Kenney
 Luly Cansares
May his memory be a blessing.
Diana Pure

With deepest affection for all who got to know beautiful little Jules. 
We loved and admired him from afar and are so grateful he could experience firsthand the love of his remarkable and precious family.
David and Marjorie Westmoreland

In loving memory of Jules Kelly Dahn
James Jones 
In loving memory of your sweet little Angel
Gary and Anne Anderson
I am sorry to hear about your loss.  The entire Dahn family is in our thoughts and prayers.
Jules will live on in the hearts of everyone that loved him.
Alanna Hochman
In loving memory of Jules Kelly Dahn
Liz and Bill Penland

In memory of Jules Kelly Dahn
He was precious. We are sorry for your loss.
May God, family, friends and memories comfort you.
Gail and Steve Obenauf
Robyn, Mark and Annabella Soldevilla
Words, however kind, can't mend your heartache; but those who care and share your loss wish you comfort and peace of mind.
May you find strength in the love of family and in the warm embrace of friends.
Drs. Morales, Esserman, and Kyle
In Loving Memory of Jules Kelly Dahn
Psychology Service, Miami VA HealthCare System

May you find comfort in knowing that your precious little son is safe in the arms of Jesus.
Hoyit & Del Bailey
Your life was full of love. I admire the courage that you showed.
Your will and determination is a reflection of the great parents that you had.
I will remember you as a hero because you were very brave.
Your uncle, Jose Rigol

With loving thoughts, in honor of Jules and his family.
Kristin Powell
Walter Robinson
In loving memory of my beautiful grandson Jules Kelly Dahn.
You gave us 3 days of hope. You showed a lot of courage.
We are praying for the parents of children born with trisomy 13 and 18.
May God Bless you.
Rosa Rigol (Mother of Rosa Rigol)
In honor of Jules Kelly Dahn
Steven & Amy Dahn of Aurora, IL

In honor of Jules Kelly Dahn
Philip Burda of Miami, FL

In loving memory of Jules Kelly Dahn
Elizabeth J. Hodges of Rochester Hills, MN

Honoring Hannah Ward

Moms Club of New Albany is honored to support this worthy cause
in honor of Hannah Ward, daughter of Kristin Ward, one of our members.

Hannah Ward
(Donation to benefit Living with Trisomy 13)
Moms Club of New Albany

Lilah Branden Hoey
January 29, 2008-February 6, 2008.

In memory of our sweet little girl, Lilah.
She was absolutely precious to us and we miss her so!
She was a true blessing and inspiration and we look forward
to the day we get to hold her again.

In loving memory of
Christopher Ryan Sadzewicz

Our little angel was stillborn October 6, 2006 with Trisomy 13.
We miss you and love you so much, you will always be in our hearts,
Love mommy, daddy, and Nick.


Alexander Robert Willgress
Alexander Robert Willgress
April 18, 2008 - April 21, 2008
non-inherited translocation Trisomy 13

Alexander, thank you so much for giving us the greatest
sixty-three and a half hours of our lives.
Love, Mommy and Daddy
Ben and Christine Willgress
St. Michael, MN

Craig and Denise Wurm
Dayton, MN

Gerald and Ruth Mathias
Wabasha, MN

Please accept our heartfelt sympathy from a friend of Debbie's
Jane Trump

Baby Jake Marquez

We do not have the words to say; so, all we can do
is say we love you and are thinking of you.
(donation to benefit the Gemma's Bears program)
Love, James and Denise Wedel
In memory of Jake Marquez
Christopher and Sandra Marquez of Lawton, OK

Carter Scott Clawson

In honor of the love, strength, and courage of the Clawson family.
(donation to benefit the Gemma's Bears program)
Amanda Evarts

Clawson Crew, The entire Dallas Division wanted to recognize the Carter Scott
and the miracle of 2 days you were able to share with him.
We hold you all constantly in our thoughts and prayers and support you in every way.
With love, Amanda, Cathleen, Nick, Juanita, Jared, Erica, John and Kevin

I think of you often and make no outward show,
But what it means to lose you, no one will ever know
You wished no one farewell, not even said good-bye,
You were gone before I knew it, and only God knows why.
You are not forgotten nor will you ever be,
As long as life and memories last, I will remember thee.
To some you may be forgotten, to others a part of the past,
But to me who loved you dearly, your memories will always last.
Nothing can be more beautiful than the memories I have of you.
To me, you were someone special, God must have thought so too!
If tears could build a staircase and memories a lane,
I would walk all the way to Heaven, and bring you back again.

For our precious and beautiful Grandson, Carter
who we miss and love with all of our hearts.
Love forever, Nana and Papa

You are all in our thoughts and prayers.
Take care and God Bless - - your strength is an inspiration to us all.
(donation to benefit Living with Trisomy 13)
The McCormick Family

Zachary James Tate
Born June 2, 2008

In however long it is that he is on this earth
the one constant he will have is that he was
blessed to be born into the Tate family.  We love you all!
(donation to benefit the Living with Trisomy 13 program)
Nora and Bryan Martinez


In honor and celebration of Payton's 1st birthday.
Payton Jo Blostrom

Payton Jo Blomstrom
August 30, 2006

John Blomstrom
Green Bay, WI

Greg Blomstrom
Clear Lake, IA

Craig and Jo Ford
Suwannee, GA

Gary and Barb Johnson
Rosemount, MN

Jeff and Susan Blomstrom
Sauk Rapids, MN

Jarret and Rachel Ford
Sevierville, TN

Scott and Rachel Gauthier
St. Cloud, MN

In loving memory
Payton Jo Blomstrom

August 30, 2006 - February 19, 2008

Tracy Hlozek
In honor of Payton Blomstrom
Jean and Mark Ostrander of Clear Lake, Iowa

In Honor and Memory of
Abby Rose Gendron

January 21, 2008 - January 26, 2008
Daughter to Thomas Gendron & Dr. Kimberly Engard

We know you were here for a reason Abby. 
Be at peace and know you are loved.
Linda Becker of Mesa, AZ

In loving Memory
Gemma Therese Holihen
Gemma Therese
September 8, 2005
Full Trisomy 13

Honoring Gemma Terese Holihen
Kevin Holihen of Oxnar, CA

In loving Memory
Rowan Johanna O'Flynn
Rowan Johanna
December 17-18, 1999
Full Trisomy 18

With love from Mom & Dad,
& your younger sister and brothers.

In honor and memory of
Gabriella Helen Piccirillo
Precious Child

Daughter of Dean & Monica Piccirillo
June 8, 2007

Julio & Michele Barina
Estero, Florida

Ann Henley Darwish
Bonita Springs, Florida

John W. Burden
Sanibel, Florida

Tara Ruska
Ft. Myers, Florida

Charles and Libby Slater
Ft. Myers, Florida

In Memory and Honor of
Emma Grace Raulerson
Emma Grace
December 2 - 15, 2003
Full Trisomy 18

Jennifer Holesha

Honoring Emma Grace Raulerson
Donation to benefit Gemma's Bears
Jennifer Holesha

In Honor of
Jocelyn Grace Schaefer

May your memories of her live on forever in your hearts!
Jennifer Smith

In loving Memory
Ryan Michael Wherry
Love My Firetruck PJs!
January 31, 2003 - January 29, 2004
Full Trisomy 18

With love for Ryan. 
Today, tomorrow, always; you are a precious part of our family BooBoo!


Our memorial page is made available as a thank you for our donors.  If you have any questions about our memorial page, require an existing memorial be corrected, or would like to submit memorial information in connection with a previous donation, please use this contact form.  Thank you!

Payton's Birthday Bears

Payton's Birthday Bears are designed to celebrate the magnificent milestone of a birthday for a child diagnosed with Trisomy 13 or 18.

Active Image

At her home with many family and friends, a live band, and a catered meal for all to enjoy, Payton Jo Blomstrom celebrated her first birthday on August 30, 2007.  The joy of this occasion was the inspiration for Payton's Birthday Bears.  Payton lived a happy and healthy life for 17-1/2 months with Trisomy 13.  These gifts confirm the joys and blessings that life bestows upon these special children.  Read More!

TRIS Survey
Shout out to all of our trisomy friends out there - no matter what number (7,8,13,18...)! Have you done the TRIS survey? Please help in collecting important information about our trisomy kids so that research papers can be developed and mor
e focused studies designed!
"The Tracking Rare Incidence Syndromes (TRIS) project seeks to increase awareness and knowledge for families and professionals touched by rare trisomy conditions and aims to facilitate improved decision making for optimal services and supports for children and their families."
Their Facebook is at pleas Join their Page
The TRIS Survey can be found here

Welcome To Hope for Trisomy

About Hope for Trisomy

Hope for Trisomy 13 and 18 is a not-for-profit charitable organization based in Florida and Texas created in honor and memory of all surviving and Angel children with Trisomy 13 and 18 and Related Conditions/Rare Trisomies. The organization is now doing business as simply HOPE FOR TRISOMY to better represent its broader scope. The organization's Board of Directors is made up of families who have living and angel children with these Conditions. We are a tax-exempt, 501(c)(3) charity.

The mission of Hope For Trisomy is to
1) FUND RESEARCH for rare trisomies and related chromosome disorders;
2) PROMOTE EDUCATION by developing programs that educate parents of children with Trisomy about options available to their child and teach them how to advocate for their child to receive all available treatment;
3) RAISE AWARENESS by creating and contributing to materials, literature, workshops, seminars, and conferences to educate the medical health professionals, the parents, and the public about Trisomy, so they have accurate and current information and resources available to them.

We know that with treatment, some of these precious children do survive, and those who lose their battle with Trisomy still bring great joy to their families, even if they live only for a moment on earth or solely in their mother’s womb.

Hope for Trisomy is focusing its efforts on three major objectives:

1. RESEARCH - Hope for Trisomy will generate funding for research for Trisomy 13, Trisomy 18, and other rare trisomies and related chromosome disorders, and will implement a process to encourage research organizations to apply for grants to conduct research of conditions.

Hope for Trisomy financially supports TRIS - Tracking Rare Incidence Syndromes, which is an ongoing research project that relies on families with children with these rare conditions to participate in an online survey. The survey is used to collect and analyze data focusing on common medical conditions, developmental milestones, therapeutic needs, family-related concerns, and demographic data of families with a child (living as well as deceased) with a rare trisomy condition. For more information, please visit:

2. SUPPORT and SERVICES - Hope for Trisomy plans to develop several outreach and support related services geared toward helping families whose baby has received a Trisomy diagnosis. Such programs will include education opportunities for parents and medical professionals, advocacy assistance, web-resource development, and financial support.

3. PRINTED MATERIALS and EVENTS - Because of current and future research, Hope for Trisomy intends to create materials, literature and workshops, seminars, and conferences to educate the medical health professionals, and parents, so they have accurate and current information about these conditions, along with resources available for families. This work will also involve coordinating Hope for Trisomy work with already existing Trisomy organizations, foundations, and support groups so that constant and accurate information is made available.

Hope for Trisomy financially supports SOFT - Support Organization for Trisomy 18, 13, and Related Disorders by contributing to their conference fund. SOFT provides annual conferences focused on the rare trisomy community and does a great job of providing medical clinics and involving the medical community in these efforts. For more information about SOFT, please visit:

We continue to provide Gemma's Bears to families diagnosed with a rare, life-threatening trisomy either prenatally or after birth. We also continue to provide Payton's Birthday Bears to celebrate the magnificent milestone of a birthday for a child who is living with a life-threatening, rare trisomy. Both of these programs provide these bears free of charge to the requesting trisomy family. For more information, please visit our website:

Please consider donating to Hope for Trisomy, whether to sponsor a bear, help support research, help send families to trisomy conferences, or to develop much needed resources for families to learn how to better manage trisomy conditions. We ultimately want to empower families to make informed decisions!

FDA Warns About Sildenafil in Kids with PAH


The FDA cautioned late Thursday against using sildenafil (Revatio) to treat pulmonary arterial hypertension in patients younger than 17, after an unexpectedly high rate of mortality was seen among children receiving the drug in high doses in a clinical trial.

During 3 years of follow-up in a study that included 234 patients, the hazard ratio for death among those receiving high-dose sildenafil was 3.5 (P=0.015).

Most of the deaths resulted from heart failure or pulmonary hypertension, which are the typical causes of mortality in children with the disorder.

Moreover, the primary endpoint of the 16-week randomized, placebo-controlled phase of the trial -- improvement in exercise capacity -- was not met.

The drug was given three times per day in low, medium, or high doses with exact dosage depending on individual body weight.

The phosphodiesterase-5 inhibitor sildenafil is approved for the treatment of pulmonary arterial hypertension among adults at a maximum of 20 mg three times a day to delay disease worsening and increase patients' exercise ability.

The drug has not been approved for pediatric use, and its labeling will be changed to recommend against off-label use in children.

Sildenafil is marketed at different dosing as Viagra to treat erectile dysfunction in adults. The FDA noted that the safety concerns do not apply to Viagra because of the "differences in patient population and the different recommended dosing regimens."

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©2006 2017 Hope For Trisomy 13 and 18, Inc