Our names are Dina (Tyszler) and Dovi Meles. We have three sons: Rafi, Joey and Akiva and we live in Cherry Hill, NJ. We recently relocated our family from East Brunswick NJ to Cherry Hill NJ to be closer to the Children’s Hospital of Philadelphia (CHOP) where our son Rafi (Eytan Raphael Shraga Ben Dina Sarah) will undergo lifesaving treatment.
Rafi, our eldest son, aged 5, is like any other young Jewish boy. He is happy, funny, well spoken, and bright. However, Rafi's immune system does not work right. After months of tests, Rafi was recently diagnosed at CHOP with a very rare andlife-threatening genetic disorder called X-linked lymphoproliferative syndrome (XLP). The prognosis for this genetic disease, without treatment, is very poor, with individuals generally not surviving past childhood.
However, there is hope for Rafi!! We have been informed that the only potential treatment available to him is a bone marrow transplant which will give him a new immune system and give him a second chance at life. As this is a genetic disorder that shows up only in boys our other two sons, Joey and Akiva were tested for this desease shortly after Rafis diagnosis. Thank G-d, not only did both boys test negative for this genetic mutation, but Akiva was an exact match for Rafi! We see the hand of G-d invovled in all of this. Rafi was diagnosed early, both of his brother were not affected and one bother was a direct match. Akiva will donoate his marrow to save his brothers life.
Rafi's treatments will be incredibly costly, even with insurance. He will be home forone year post transplant and will need PT/OT and tutors/rebbis as Rafi will be missing out on his entire kindergarten school year. In addition, Dina will have to go out of work for several months to be with Rafi in the hospital during the transplant process. Dovi will have to reduce his hours at work and care forthe other 2 young children at home (both under the age of 3). This will create an incredibly difficult and completely unplanned situation for us financially. We are also working with CHOP specialists to look into alternative methods for Rafi to be able to have a family of his own when he is older as a bone marrow trnasplant will likely make this very difficult for him to do.
Though it is incredibly difficult for us to do, as we always prefer to be on the giving end as opposed to the receiving one, we are asking our friends, community and all of klal yisroel for their generosity and support as we face incredible financial challenges and uncertainty in the months ahead. Please click here to contribute. Any contribution at all is welcomed and greatly appreciated.
We thank you so much for the time and effort. We know you will give towards this and that you will share this cause with your networks. We hope and we pray to share only good news with you soon. Please continue to say tehillim for Rafi (Eytan Raphael Shraga Ben Dina Sarah).
Dina (Tyszler) and Dovi Meles
All donations are tax deductible. A charitable giving tax deductible receipt will be automatically generated upon donation.
The family established this fund in consultation and with the haskama of HaRav Hershel Schachter, rosh yeshiva and rosh kollel at Yeshiva University's Rabbi Isaac Elchanan Theological Seminary.