Thursday, May 14, 2009

In Memory of Abby E.

Please Pray For this Family Today.

In Memory of Abby
February 20th 2006- May 14th 2008

This was taken from my friend Sara's Facebook Group.

Hello. My name is Sara. My husband (Shannon) and I were married June 15, 2002. We have 3 beautiful girls. Madeline (4), Cadence (1) and Abigail- our 2 year old daughter who passed away May 14, 2008.

Abigail Grace was born on Feb 20th, 2006. She was taken 2 months early for heart arrhythmia's in utero. She spent 8 weeks in the NICU and then was home for about a month before she became very dehydrated and was admitted to the hospital.
She spent 4 months in the hospital in that single admission. She always had diarrhea so all of her feeds were stopped and she was placed on strictly IV fluids. She had a g-tube placed which she got continuous feeds through.She got half of her nutrition through TPN which goes in an IV line called a central line. She had several PICC lines placed.

Her main problem was that she could not absorb nutrients from food and she had chronic diarrhea her whole life. I mean she NEVER had a formed stool in her entire life.
Her other and equally important problem was an immune problem with her B cells. The problem is that even at age 2, no one knew why her body was doing this. The doctors did not have any answers.

She went to Cincinnati Children's because they are the top when it comes to GI and Immunology but they still didn't know why her gut would not take in the nutrition. Also something very interesting is that Abby was born with hair so brittle it would fall out if you touched it. Her organs were affected by her immune disorder as well. Her liver and spleen were very enlarged.
Abby was on several medications, Prograf at one time, Prednisone another time. She got IVIG and Pentamidine every month. She required blood transfusions about once a month and she spent more time in the hospital than out.
She was a very happy girl though. I mean she had a smile that would melt your heart and her hugs made you feel like you were the only person she really loved that much! In April, Abby was admitted to ACH in septic shock. She was placed on a ventilator. She spent 6 weeks there before she passed away.

Abigail died in my arms on May 14, 2008. She was 2 years old.
The week before she passed, I found her diagnosis on OJRD (Orphanet Journal for Rare Diseases). It is called Syndromic Diarrhea, Phenotypic Diarrhea or Tricho-Hepato-Enteric Syndrome. All of the information I have found has been from France.
I am attempting to find others with this syndrome or at least find out if there are any others here in the US. I created this group to hopefully raise awareness about this syndrome and find others who may know something about this fatal condition.
A big "Thank You" to all who have visited this site. May God Bless each and every one of you.
Please visit these sites for more information about Abigail or Syndromic Diarrhea of Early Infancy Search: Baby Abigail Story Her carepage name is: AbbyGrace2007

Thank You For Praying For a Cure and For Abby's Family!


1 comment:

Paul said...

Hi Sara/Shannon,

Are you still investigating the syndromic diarrhea in early infancy? I believe my daughter also has this, please email