This page lets us express how our hearts are touched by these special children, and their families' experiences.
| Media |
| Bryce Daniel |
Video on Wisconsin Right To Life |
| Loving Zeke |
A mother discusses her experiences with Trisomy 13 |
| When A Baby Dies |
A grieving mother ponders the question: "How are you doing?" |
| A Bittersweet Journey (video) |
Video in honor of Matthew Benjamin Spadoni |
| Patrick
Henry Hughes |
A young man overcomes his
"disabilities" as he explores his extraordinary
musical gifts--The Music of Opportunity |
| Faces
of Trisomy |
Video set to the song "Ordinary
Miracle" |
| Maddy
Curtis |
Audition on American Idol |
| Zakk
Our Angel |
A video tribute by the
parents of Zakk Anthony Devlin |
| My
Redeemer Lives |
A father, a son, a triathalon,
and the power of Christ within |
| A
Tribute to Lucas |
Baby Lucas had Trisomy
18 |
| In
Memory of Braylen Merck |
Braylen had been diagnosed
with multicystic kidney disease... |
| Choosing
Thomas |
Touching Trisomy 13 video |
| Flores
de Marcela Video--part I |
(click on right arrow for
English subtitles) |
| Flores
de Marcela Video--part II |
(click on right arrow for
English subtitles) |
| Gunner
Health Care |
Parents concerned about
national health care program |
| I
Have a Voice |
Video for Downs Syndrome
awareness |
| Connor's
Slideshow |
Slideshow for baby Connor |
| Angel
Jody Michael |
Video in memory of precious
baby Jody |
| My
Story--CDH |
Video tracking Ava's experience
with CDH |
| Ava's
Fight To Survive... |
...Congenital Diaphragmatic
Hernia." Birth story video. |
| Little
Angels |
Created by Terri Helmick
in honor and celebration of all the babies born
with Congenital Diaphragmatic Hernia |
| God
Doesn't Make Mistakes |
Beautiful Down's Syndrome
song and video |
| From
the Heart Of a Parent |
A collection of short videos
of families who have been comforted by Now I Lay
Me Down To Sleep (photography) |
| Now
I Lay Me Down To Sleep (video) |
Video created for families
facing Trisomy |
| Luke's
Slideshow.ZIP |
Slideshow created for Luke
(ZIP DOWNLOAD) |
| Calling
All Angels |
Video created by the parents
of Zion-Grace Elizabeth Larson (anencephaly) |
| Trisomy
18 and Living (Kayden, age 7) |
Photo montage of Kayden,
who is now 7 years old, living with Trisomy 18 and
full of smiles |
| Mieko |
Video in honor of Mieko
who had Trisomy 18 |
| 20
Iron Man's |
News flash covering a Texas
man who is attempting to complete 20 Iron Man marathons
in one year to raise awareness for Trisomy |
| Zion-Grace |
A multimedia website created
by the loving parents of Zion-Grace Elizabeth who
passed away on 4-15-08 |
| A
Young Mom Chooses Life |
Inspirational testimony
of a young mother who courageously chose life for
her little girl |
| Remembering
Mieko |
A little girl with Trisomy
18 |
| My
Redeemer Lives |
Incredible video about
the relationship between a father and son.... and
God's relationship with us. |
| Patient
Centered Care |
Site that discusses ethics
and patient centered care |
| Fearfully
& Wonderfully Made |
Prolife music video on
YouTube |
| Nick's
Testimony |
A young man born with no
limbs proclaims Christ in extraordinary ways |
| Give
Me A Chance |
Prolife song and video
by Karl Kohlhase |
| Down
Syndrome Association Video |
A video presentation from
the Down Syndrome Association |
| Hidden
Treasures |
A support site for families
on the Trisomy 21 Journey, featuring a powerful
video montage |
| Baby
Annie |
A touching video presentation
set to music.
Baby Annie died in a world class Children's Hospital
within 24 hours arrival at the age of 80 days.
The events that transpired in those hours involved
violations in health care Laws, hospital policies,
professional codes of ethics and indeed there
is a strong suspicion of criminal actions. The
final medication report is missing and the narcotic
cabinet reveals that over 30 times the amount
of morphine ordered was removed from the cabinet,
with none shown as wasted or returned.
The Coroner's Pediatric Death Review Committee
determined that the care provided was not appropriate
and that it was by no means certain that Annie
needed stressful surgery or prolonged intubation.
She was never on life support. A specific cause
of death could not be determined so the Coroner
determined that the death was due to "complications
of trisomy 13".
Although the Chief of the Critical Care admitted
that the actions of his staff were "unacceptable"
and the hospital provided a written apology for
ineffective communication, effective and sincere
plans for improvement could not be developed in
collaboration with the hospital.
The United Nation's High Commissioner's Office
became aware of the case and described many ratified
conventions under which complaints could be made.
Annie's family has made a complaint with Human
Rights and appealed for a Coroner's Inquest with
the support of many major disability groups.
All children, regardless of genetic disposition,
deserve a chance if the family determines that
it is in their best interest. Otherwise, they
deserve a peaceful and dignified death. Annie
was denied both. |
| Chad
Elliston Story |
Story featured in "The
Daily News" in Michigan |
| YouTube
Video |
Austin's parents created
a personalized video for the song, "Down The
Road Of Bittersweet" |
| A
Prayer Shower |
A downloadable PowerPoint
presentation (about 5MB). You are invited to download
the presentation, change the names and use it for
your own Prayer Shower. Save this file to
your desktop before opening it. |
| 99
Balloons |
A touching video tribute
to Elliot's 99 days of life. |
| "Choose
Love. Choose Life." |
A video presentation defending
life, set to "Amazing Grace". |
| Peter's
Video Montage |
A video presentation set
to the classic song "What a Wonderful World" |
| In
Memory Of Fleur |
A video presentation from
the mother of little Fleur (Flower in French), who
was the inspiration behind the "The Little
Girl Version" of the song "Down The Road
Of Bittersweet" |
Samuel
Mabeus, A Gift from God |
The
Story of Samuel, a child diagnosed in-utero with
trisomy 13 moasic who was carried to term against
medical advice to be a beacon of light and hope
for many. |
| Catherine's
Montage |
Video
montage a mother made in honor of her daughter with
Down's Syndrome. |
| WCCO
story |
WCCO story about reporter Maya Nishikawa's daughter,
Mieko, who has Trisomy 18. |
| |
The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.