Our daughter, Sarina, passed away at 6 months of age from Wolman's disease.  My wife and I went through a very healthy grieving process.  And now we would want to help others.

Our story starts when my wife was 7 months pregnant with Sarina and the Sonogram tech found her adrenals to be prominent.  After a fetal MRI, they passed it off as probably being nothing but to check it out again after baby is born.

On September 10, 2008, Sarina was born.  A couple of days later they did a sonogram on her.  And a few days after that,  I got a call from my wife at work that the Sono tech spoke to the pediatrician and that they are suspecting Wolman's disease.  My wife had no clue what that was.  So I googled it and there I saw the most alarming news- infant will die within first year of life and that it is mostly seen in Persian Jewish communities (which is what we are).  After meeting with Genetic doc and some research, we made the decision to move from our home in Long Island, NY to Minneapolis to treat Sarina with a bone marrow transplant.  We took our then-3 year old daughter, Michal, with us too and moved there.  After transplant, she seemed to progressing well but then a complication from the transplant called VOD (Veno Occlusive Disease) made her condition worse and worse going through dialysis on a daily basis, being on a vent, and at some points being unconscious from paralytic medications.  Our little baby went through a lot in those 6 months.  On 3/10/2009, she died after being told there was nothing else to do for her.

We loved her a lot and think of her all the time.  However, my wife and I were able to move on with our lives.  Within a few months, my wife got pregnant with twins through IVF with pre-genetic diagnosis.  Our twins, Shiri and Shia, were born on January 31 2010.  A little less than a year after Sarina's passing.  We always tell ourselves that Sarina gave us our twins.  Without her, we wouldn't have had them.  So she is with us, through them.

We dealt with our grief by sticking to our spiritual belief that everything happens for a reason and to be always grateful for what we have.  We always remained positive and we knew Sarina was here with us for the 6 months she lived for a greater reason that may never be revealed to us.  

We hope our story will help others.

Thank you for reading.