Updates



July 2012

2012 has been a great year. The Montgomery County Intermediate unit and the ZWF opened up the first vision classroom in King of Prussia, on Henderson Road. This has been a dream of mine for a long time. My boys did not have this amazing opportunity and I am so thankful there is a class for visually impaired preschool children and blind children to go and learn and be with their peers. I want to thank Lisha Yochimowitz, Ben’s preschool vision teacher who made this class happen!

I’d like to thank the Make A Wish Foundation for granting Ben’s wish to visit Disney World. We went in May 2012 and had a blast. We stayed at Give Kids the World in Kissimmee. It was a truly amazing place with wonderful volunteers. The kids loved the pool, model train room and Matthew’s playground. Ben caught his first fish and Olivia auditioned for American Idol and she was fantastic. Leah loved getting her hair, nails done too.

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. Olivia in going into 4th grade, Ben is going into 2nd grade and Leah is in preschool.

 

January 2009

Ben and Olivia welcomed their new little sister Leah Grace into the world on January 30, 2009. Because the doctors are able to locate the missing genes in Ben, they were able to send Leah’s blood to Germany. We got results last week and Leah does not have the gene deletion therefore will not have this factor H deficiency. This disease or factor H deficiency is not clearly defined at this time. We are closer then ever before.  

October 2008

Ben’s hematologist, Dr. Eddie Attiyah, found a researcher in Germany that was willing to take Bens’ blood and do some genetic analyses to pin point this disease. He found that Ben has two genes completely deleted. Now the research is on to find other families that have this genetic deletions.  

September 2008

Due to a detached retina in Bens’ Right eye surgery was the only option. Dr. Maguire from Shea Eye Institute was the doctor that did Ben’s surgery. Going into surgery all we knew was he was going to attach his retain and his vision was going to be restored to same as before. However that was not the case. An hour into surgery Dr. Maguire said the retina was much worse. He said he could continue or stop at this point. With no hesitation we had him continue the surgery. Unfortunately the surgery did not go well. He is blind in his right eye. Up until now that was the “good” eye. The left eye had a small window of vision about the size of a quarter that is blurry. We did laser surgery on the left eye to try to help him see better. His vision is 20/200 so he needs a cane to walk and orientation and mobility teachers are crucial to help him learn to get around. We pray that his vision will get better on its own and that technology will advance in the future for better recovery of his eyes.    

May 2007

Researchers believe they isolated two missing genes in Benjamin’s DNA. These genes are responsible for a Factor H deficiency in the blood. Another test will be run to confirm these results. This could be the break we have been praying for.

 

Ben and Olivia (above), Zach's little sister and brother, stand next to Zach's plaque at the playground.

September 2006

A handicap accessible play set is up and being run upon by children in Lower Providence Township. The Lower Providence Park, located in Eagleville, PA is home to this new addition. The plaque at the site reminds everyone how precious the lives of children should be. Thank you to everyone involved.