Benjy's Blog: www.BenjysBlog.com

In Memory of a Hero: Benjamin Vincent Margulies, 2004-2006

It is with great sadness that we must report today that Benjy has lost his battle with Tay-Sachs, and passed away this morning.   While the family is of course devastated, we take  comfort in remembering the time we had -- however short -- to get to know, love, and be inspired by this hero.   He waged an incredibly brave battle against a terrible disease.    And although he might have lost that battle in the end, he'll always live on in our hearts, and in the brave example he set for all of us who knew him.   

For all of those who have helped us in the past few years with your thoughts, prayers, actions, and donations, we cannot thank you enough.  You have helped to ensure that the time Benjy spent on this Earth was time surrounded by those who loved him, and could give him the care that he needed.  We thank you, and we ask that you keep us in your thoughts and prayers in the days ahead. 

And we ask that you, like us, continue to be inspired by the brave example set by this incredible little guy. 

Update - Funeral Details:   

• Benjy's funeral will be held at the Moore Funeral Home in Valley Stream, New York, on Wednesday the 29th, from 9am to 10am.  (54 West Jamaica Avenue, tel: 516-825-0036).  Benjy will then be laid to rest in Manville, New Jersey, where he will be surrounded by family members of multiple generations.
• Balloons, not flowers:   Since Benjy always loved balloons, the family has asked that balloons be sent instead of flowers.
• Bright colors, not black:  The family has also requested that attendees not wear black, but wear bright colors instead -- in honor of all the light that Benjy brought into our lives.

Update - Donations:   

If you would like to make a donation in honor of Benjy, Josh has suggested sending a check to the people at Duke University who tried so hard to help Benjy:

Connie Stephens
Program Administrator
Pediatric Blood and Marrow Transplant Program
Box 3350 
Duke University Medical Center 
Durham, NC 27710

(People should put “Benjamin Margulies” in the “Comments” section of the check, and make the check payable to the “Pediatric Blood and Marrow Transplant Program.”)

Goodbye Zonegran!!!

We apologize for not posting sooner...lots going on including the fact that my laptop went ka-put.  We've had a very busy month...Uncle George and Aunt Nicole got married...it was Benjy's first public party since we went down to North Carolina in April 2005.  Benjy really seemed to enjoy himself too...he definitely seems stimulated when we do something different.  We also are almost finished getting all of Benjy's therapies lined up...we've now got a great Physical Therapist (Jake); speech/feeding therapist (Bruce) and Occupational Therapist (Brenda).  Since Josh was able to convince Early Intervention that Benjy needs 6 sessions a week of PT at 60 minutes a session...almost unheard of in the EI world...we also have to find another PT to fill in since Jake unfortunately can only do 2 sessions a week.  Our case manager is still looking for a vision therapist too.  In the middle of it all, we spent 48 hours inpatient at Montefiore so Benjy's neurologist could run a video EEG to see if Benjy's having seizures.  While we weren't thrilled at the thought of spending more time in a hospital, and the accomodations weren't quite as luxurious as at Duke (in NC it seems that patients are entitled to private rooms, unlike in NY) we were THRILLED with the results....NO SEIZURES!!  While Benjy's EEG is not "normal" (we're not sure what that means exactly) we do know that he's not having seizures.  So, we've started the SLOW wean off of the zonegran.  Apparently Benjy's been on such a high dose...it was so high it would, not could, knock out an adult...so we're more than happy that we can take him off of it so he'll be more awake during the day.  Even the little that we've taken him off already has made a difference.   Even though Benjy was in the hospital for Halloween, we did dress him up in army fatigues and his Grandpa's cap from when he was in the Korean War.  Special thanks to Gramille's friend Cindy and her friends from the "Moms of Malverne" for Benjy's Fall/Winter and Spring wardrobe...including the fatigues!!  We really appreciate it!! 

Uncle George and Aunt Nicole "beaming" at their wedding...

Benjy in his Halloween outfit....our little soldier!!  Not looking too happy about having his picture taken!!!

Benjy sucking on his pacifier...if you recall, Benjy lost the ability to suck...one of the reasons they put him on the feeding tube...so we're thrilled that he's regained it, big time again!!  We'll be scheduling another swallow study soon, after he comes off of more of the zonegran.  Hopefully we'll get the green light to start feeding him by mouth again...Bruce thinks he's ready!

We'll also be taking Benjy to an opthalmalogist at the end of the month, we had an appt. scheduled last week but we had to cancel when we got the word that they had room for us at Montefiore.  We're hoping that a pair of glasses and/or a patch will help with Benjy's "lazy eye" and help him see better.

A couple of sad notes...please send your prayers and good thoughts to our friend Madison.  Madison is a beautiful little girl with Tay Sachs who went through the transplant this summer but tragically she's been experiencing a number of life threatening setbacks...the latest is that she's on a ventilator and unable to breathe on her own.  The family has made a very difficult decision to take her off of the life support on Tuesday...so please pray for a miracle.  We're also very sad at the loss of our family friend Alfred, and our prayers and healing thoughts go out to Danya and her family.  Also, our good friend Diane lost her mother and our prayers and good thoughts go out to Diane and her family as well.