Special Family Network

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.

“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.

Read MoreĀ

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

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.

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.

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.

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.

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.

Here are some interestingĀ 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.Ā It can save lives.

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

A young girlā€™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.