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.

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Please take a moment to read this very special article about a woman who teaches music to people with special needs.

At what turned out to be Jessica’s last lesson, I asked her what rain sounded like. She actually gave this some thought before gently playing a tinkling sound on the higher notes that steadily became more insistent. I again harmonized with chords whenever I could on the electric keyboard. “How about the wind?” I asked. Jessica responded by playing a glissando up and down the keys with varying intensity. “Thunder?” That was easy. She immediately gave a few staccato bursts from the bass keys. “OK! Lets play the music for a short Spring thunder storm.” We dove in. It was wonderful. Not only was it totally free-form, it was VERY musical! All too soon, the lesson was over and Jessica’s father, who usually waited across the street at the local coffee shop but today waited across the hall in our living room, popped his head into the studio and said that it was time to go. Read More

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.

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.

Many retailers are more than willing to give a donation to your cause. You just need to know where to look. Websites like igive.com and goodsearch.com (which is powered by Yahoo) are free to sign up. From their website, you click on links for stores like Barnes & Noble, Ebay, Gap, Drugstore.com, Fandango.com (there are many more), then a percentage of your purchase price will go to the charity of your choice. Mine is Shwachman-Diamond America in honor of my son with Shwachman-Diamond Syndrome.

For more information on Goodsearch, please see this article.

My older son has been in speech therapy for quite a while now. The word Apraxia has been mentioned as a possibility for his speech delay, and, of course, I had to get on the internet to research it. I found a few interesting articles that I thought might be beneficial to those going down the same road or for those looking for answers.

Cases of Apraxia of Speech are on the rise.

Baby Babble or a Sign of Speech Problems.Â

It is unfortunate and sad that so many women choose to abort a child because that child has a disability that he or she had no control over. Every human life is sacred. David MacDonald has been speaking out on behalf of the disabled unborn.

This is a good vidoe on how to use an Epi-Pen. It is very important that everyone knows how to use this life saving device with the rise of allergies in this country.