Ben's Story



I was two months pregnant with Ben when Zach passed away. He is 1 ½ years old and is battling a rare, unknown disease. We have been trying to find a diagnosis for quite some time and are becoming more frustrated with each day. Ben was 6 months old when the symptoms first appeared.  He had been sick with a cold, which then escalated into a fever.  It was quickly discovered that he was suffering from the same, undiagnosed disease as his older brother, Zachary, who has since passed away.   

Due to the low platelets in Benjamin’s blood, seemingly destroyed by any kind of virus, he lost his sight.  Ben is now 3 ½ and he has no vision in the right eye and very little in the left eye. He walks with a cane to help him with his mobility and wears glasses for protection of his eyes. Ben is learning brail and had many specialist that come to the house to work with him. School is not an option at this time. We almost lost him several times the first year of this life, in and out of Children’s Hospital of Philadelphia since he was 6 months old. Now our stays at Chop are shorted and we know that the Fresh Frozen plasma is helping replace the factor that getting destroyed in his boys when he has a virus. 



At three and half years old Ben now receives Fresh Frozen Plasma to replace factor H in his blood every two weeks.  When Ben gets a virus of any kind his body attacks a factor in his blood called factor H. This factor gets attacked due to two genes deleted in his DNA. The research is still continuing but we are closer now to a diagnosis than ever before. Both of Ben’s sisters do not have the gene deletion. Olivia is now 6 years old and baby Leah is two months old.  

Ben has “school” twice a week at home and is learning to read Braille. He mostly enjoys hitting the button on the Braille writer at the moment. He is also receiving assistance with mobility and the use of a cane as well as how to dress himself and other tasks to teach him independence.   


Summer 2012

Ben has been doing really well. Research for Ben is slow to say the least. He still gets blood infusions of Fresh Frozen Plasma every two weeks. Hospital stays for Ben are rare, thank the good Lord.

Ben has been learning braille and reads and types it very well. We are enjoying the summer and are hoping for a wonderful year for Ben in 2nd grade. This will be his first year in school full day without wearing a mask. Please pray he stays healthy.


Natalie Wallace, Ben’s Mom

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