I just saw your story on the WGAL news Tues night and I wanted to contact you. My daughter, who is now 3 years old, had a small bowel, liver, pancreas, stomach transplant when she was 11 ½ months old. She had been evaluated and listed at Pittsburg for transplant, but when we found out about an alternate to TPN, Omegaven, we went to Boston and she ended up having her transplant there. I wanted to know if you have ever heard of Omegaven? The doctors do not tell you about this alternate because it is not yet FDA approved, they are still doing studies on it. However, many children are on it and it does not cause liver damage, and can even reverse some liver damage if the liver is not too far damaged. Not all insurances cover this drug, but it has been so successful that at Chidren’s Hospital Boston, the hospital supplies it at no cost to the patient. Our daughter was on it for a 6 week time period before her transplant but her liver was in complete failure and the damage could not be reversed. We do feel that it kept her liver from further damage and allowed her to hang on until transplant. We have met other children that are on it, some for over 2 years, and have actually went from being yellow to normal skin color and have avoided liver and small bowel transplants. I know this sounds unlikely and our doctors did not inform us of this option either. We found out by word of mouth, but we feel if we had known about it sooner that our daughter could have had a different outcome. I would be more than happy to talk to you and give you more information about Omegaven or any part of having and caring for a child with short gut and then small bowel transplant. Also, here is a link to a helpful website about short gut that gives tips for parents about TPN, central lines, feeding tubes, ostomies, etc. and also gives more info on Omegaven. grey.colorado.edu/shortgut/index.php/Main_Page. It is a great site from other parents going through similar situations. If you would like to follow my daughter’s story, go to www.carepages.com and put in her name aliyahdiffenbach (no spaces) to find us. Please feel free to contact me at michdiff@dejazzd.com for any reason. I would be more than happy to get you in contact with doctors who use Omegaven or would love to just chat with you! Life with such a medically needy child is extremely difficult at times. Hang in there! We will be praying for Mason! Take care, Michelle Diffenbach

Hi Susan and Bill you have a very special little boy. I am in Iraq as a paramedic, I always read my local paper online and saw your little angel with that smile and it made me think of my grandchildren. I hope what I donated will help. I will pray everyday for your family.

Although I don't know your family, your story touched my heart. Having given birth to a preemie myself, I especially delighted in seeing the pictures of you "kangarooing" Mason. That was always a special time for me. I am praying for your little boy. May God bless your family.

Georgians are working hard for Mason since his Uncle Jon & Aunt Jessie let us know how we could help. 8-30-09 Stay strong Mason & Family, you're in our thoughts & prayers...

HELLO MASON SUSAN N BILLY.IM SO HAPPY 2 HEAR THAT MASON IS BACK OUT OF HOSPITAL..I ALWAYS PRAY FOR HIM AND ALL OF YOU.HE IS SUCH A FIGHTER FROM THE VERY START.YALL WILL CONTINUE TO BE IN MY PRAYERS.IF YA NEED ANYTHING FEEL FREE TO CONTACT ME.PEACE N LOVE TO YALL