» Other Syndromes and Disorders

99 Balloons: An Inspiring Letter from a Father to His Son

Honey — Wed, 21 Jan 2009 04:27:48 +0000

This is such an emotionally moving video done by a man to his son, Elliot, who was born with Trisomy 18. Eliot only lived 99 days, but his life touched so many.

Most parents who find out that their child has Trisomy 18 before birth choose to abort their baby. I applaud Eliot’s parents for choosing life. Their choice allowed them the precious gift of their son. As his father says in the video:

“An underdeveloped lung, a heart with hole in it and DNA that placed faulty information into each and every cell in your body could not stop God from revealing himself through a child who never uttered a word. Not a pulpit not a slick presentation not a best selling book, but a six pound boy with Trisomy 18. God found great pleasure to take a lowly thing in the eyes of the world and show truth.”

Please watch this tribute to their son.

Click here to view the embedded video.

Cord Blood Stem Cell Transpland Saves Young Boy

Honey — Fri, 01 Feb 2008 03:56:58 +0000

Please take a moment to watch this video about a young boy named Titus who has aplastic anemia. Titus was born with his condition and this cord blood stem cell transplant was his best hope. It is a very informative video that explains how the transplant works.

Click here to view the embedded video.

Not Alone

Honey — Sun, 27 Jan 2008 21:03:31 +0000

“And the two will be one. So they are no longer two but one.” Mark 10:8

It is every parent’s worst nightmare: Learning that there is something wrong with your child. I remember that feeling all to well when a doctor told me that my son Luke probably had Cystic Fibrosis. I felt as though the room was shrinking, my brain went numb, and all I wanted to do was hold my baby and cry. It turns out that my son did not have Cystic Fibrosis, but a rare genetic syndrome called Shwachman-Diamond Syndrome. It was a very long and difficult road to diagnosis and there were many times that I almost forgot about the one person who understood how I felt the most. My husband.

Special Needs Children and the Power of Play

Honey — Tue, 11 Dec 2007 02:40:36 +0000

See how the power of play is helping special needs children like Owen reach new goals and become more interactive with his family.

Click here to view the embedded video.

Diamond Blackfan Anemia – From the Perspective of a Thirteen Year Old Girl

Honey — Wed, 05 Dec 2007 03:56:25 +0000

This is a letter written by a thirteen year old girl with Diamond Blackfan Anemia that shares her struggles, hopes, and dreams. Matter of fact, she believes that the biggest thing that she and others in her situation needs are blood donors. Please read her letter and think about giving the gift of life to someone in need this Christmas season.

Organ Donation Saves a Girl With Gastroschisis

Honey — Fri, 30 Nov 2007 05:28:59 +0000

Read about Daisy, a young girl with Gastroschisis, who, thanks to an organ donor, is leading a full, happy life. Organ donation can save a person’s life. Please take more time to learn about organ donation at www.organdonor.gov.

Also, take a moment to learn about becoming a part of the National Marrow Donor Program at www.marrow.org. Your blood and bone marrow could save the life of a child suffering from Leukemia or any number of bone marrow dysfunction syndromes.

A Wiskott Aldrich Syndrome Blog

Honey — Thu, 29 Nov 2007 15:10:57 +0000

I found this wonderful family’s blog on their struggles as their son battled Wiskott Aldrich Syndrome. It especially hit home for me because they thought that my own son had Wiskott Aldrich Syndrome when he was an infant, but it turned out to be Shwachman-Diamond Syndrome. Please take a moment to look at this blog and pray for all who are dealing with this disease.

A Wiskott Aldrich Syndrome Story

Honey — Thu, 29 Nov 2007 03:26:38 +0000

This is a very good video that shows a family going through their son’s treatments for Wiskott Aldrich Syndrome. Thankfully, today PJ is a healthy, happy child. Please take a moment to view his story.

Click here to view the embedded video.

Kansas Senator supports parents of disabled children

Honey — Mon, 16 Jul 2007 02:08:46 +0000

A wonderful article on how Kansas Senator Sam Brownback says not to pressure parents who are going to have a special needs child to have an abortion.

Cord Blood Stem Cell Transplants

Honey — Mon, 04 Jun 2007 20:34:29 +0000

Here are some interesting� videos on cord blood stem cell transplants. Cord blood stem cells have the potential to save thousands of lives. Encourage any expectant mother that you know to either save or donate her child’s cord blood.� It can save lives.

Click here to view the embedded video.

Specific Syndromes and Disorders Articles

Honey — Tue, 15 May 2007 04:40:17 +0000

Bethany, a young girl with Angelman Syndrome, is a true miracle.

A young girl’s struggles with Digeroge Syndrome are making her family stronger.

A new test may be able to screen for Fragile-X Syndrome.

Andretti Green Racing and Bayer HealthCare team up to form a fundraising program for Hemophilia.