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In Loving Memory

Here is Jason's story, as told by his mom Ginny.


After an emergency C-section on April 4, 1977, Jason entered the world at about 6PM. At his second visit with the pediatrician, I was asked to bring him to the hospital because they didn’t like his blood tests. They suspected leukemia but nothing really showed up and they sent him home.


For a few years he did relatively well except he kept getting the croup. Then when he was about 4 he became sick and couldn’t eat but kept having diarrhea. Eventually, he was admitted into the hospital. At that point he wasn’t eating or drinking so they gave him an IV and watched him because there were no fluids in his little body. After numerous hours watching him, he finally urinated. It was at that point that we were sent up to Children’s Hospital of Pennsylvania (CHOP).


We spent several years at CHOP traveling back and forth, collecting his bowel movements, getting X-rays and having bone marrow tests. They thought he had Cystic Fibrosis and/or Crohn’s disease. After numerous hospital stays, numerous X-rays, etc., the radiologist came running after us to see the doctor Jason saw. She had just attended a conference about SDS and wanted to take yet another X-ray but this time of his knee and wrist. Sure enough he showed the signs she had heard about for SDS.


This began even more visits until he was finally diagnosed. In the middle of all this I got divorced and moved back to NY with the boys to live in my parent’s house. Jason was seeing Dr. Jeff Lipton and he was amazing.


We found out that Jason was in need of a bone marrow transplant and it turned out that my other son, Brad was a perfect match. He was going to be the first SDS patient in the world to receive a transplant. Well, the transplant was successful, however, the chemo he received killed his heart cells.


Jason passed away on August 15, 1987. He was 10 years old.


Ginny, Jason's mom, wrote a beautiful poem.


I Am Still Their Mother


Long before the child was born

I dreamed of being a mother

Into my life came a beautiful boy

With a smile that made me melt

He was tiny, soft and full of life

And I cried when I first held him.

As he grew he became part of me

And we laughed and cried together.

It seemed like I needed nothing more

Till I found out he would have a brother.

Along came this fabulous bruiser of a child

And the three of us could do no wrong

As long as we were together!

But all that's perfect cannot last

And my number one son left us all too soon.

We cried, we talked, we tried to understand,

But number two and I had to pull it together.

And so we did and through us he lives

And I am still their mother!


Ginny Gordon Bennette



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