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.

Benjy's Magician

Sorry...it's been a while since we posted, but somehow the camera software "fell off" my computer, now we have to download it again...and of course it's stuck somewhere in the storage unit!  Luckily my phone takes photos, so I do have a few to share!  First, Happy New Year to our Jewish friends and family and Happy Birthday to our sexy Aunt Mabel who just celebrated her 93rd birthday yesterday!!  Also, please say prayers for our little friend Madison who has Tay Sachs and is going through the transplant now. 

So, what's been going on with Benjy?  Well, Josh has been busy trying to get Early Intervention and Medicaid in order...I'll spare you the details, but it's been a full time job.  It's great that these services are available, but the hoops they make you jump through are ridiculous!!  We're "told" that Early Intervention should finally kick in next week, so in the meantime, thank you to the generosity of so many of our friends and family, we've been able to start Benjy on physical therapy.  And, we found a real magician of a therapist...he does a special kind of therapy called Medek or CME, developed by someone in South America in the 70s.  There are very few therapists in the US who are trained in this method, so we were very lucky to find Jake.  Luckily, he will be able to continue the therapy under Early Intervention...we only wish he had 7 days a week free to give us!!  We have already noticed a lot of changes in just 7 sessions.  We couldn't be happier!!  He also teaches us things to practice at home...and Benjy really seems to love it.  He works extremely hard at it, but I think he's starting to feel stronger and that makes him happy.  He's even starting to focus more too, so keep your fingers crossed that he continues to do well and progress.  Here are some photos ...

Here's Josh performing one of the "magic tricks"...not an easy task...but look at the results!!  Pretty amazing stuff...with very little support Benjy is able to almost stand....

Here's Jake showing us how to do a sitting exercise with the added bonus of improving head and neck control. 

We still are "in between homes"...Benjy and I stay mostly with my folks while Josh goes back and forth between here and our old apartment where his dad is staying.  We did get a treat this week...we got to stay at the "W" hotel in Union Square where I had a work event.  Benjy really seemed to like the change of pace and NY excitement.  And, it was obvious that he was seeing, when he checked out our celebrity spokesperson, Jean Smart...it was kind of funny...he's got eyes for the pretty ladies!!  Oh, that reminds me, make sure you get your flu shots this year!!  Benjy already got his!!  If you want to find out where, you can go to the Lung Association's website at www.lungusa.org and type in your zipcode under the flu clinic locator.  We heard some very sad stories about people who didn't get their shots, so don't take a chance!!

Why is this Little Boy Smiling?

Could it be because he likes the music he's listening to on his headphones...or more likely because Aetna FINALLY listened?  We're happy to say that after months of fighting with Aetna, hundreds (700 to be exact) of letters to Aetna's CEO, Aetna sent us a check to cover "skilled nursing" until the Medicaid waiver program and Early Intervention kick in.  VICTORY!!  While Aetna still did not want to admit that they were responsible for Benjy's therapies as well, by sending us the check directly, they know that we will also be using it for therapy.  So, THANK you to everyone who wrote letters on Benjy's behalf.  Check out today's NYTimes...they did a major article on our situation.  While some of the facts are wrong...for example Benjy can see and hear...we know that his eyesight was affected but that's even getting better each day...we are thrilled that they took an interest in Benjy's story.  We hope to help not only Benjy but other families who are having trouble with insurance issues moving forward.  Even without the therapy, Benjy continues to improve daily.  He's moving his arms and legs more and tries to stand, with support of course, and often is able to stand supported for a second or two...something we never thought we'd see.  We are on the hunt for good therapists now, we think we might put the ABR therapy on hold at the moment since it's more of a passive approach and Benjy seems to really do best with therapies that involve movement.  We'll be meeting with a therapist the end of next week hopefully who is involved in another "unconventional" approach, MEDEK or CME, which we think might really benefit Benjy.  We're also looking for aqua therapy programs and horseback riding therapy since they both have shown great results with other children.  We're also looking for a pediatrician, since we're still in Valley Stream, we'd like to find one who is convenient to VS as well as Queens, where we likely will end up moving at some point...unless we can find an affordable apartment in Manhattan that can accomodate us with all of our needs.  Thank you again...and please keep up the good wishes and prayers for Benjy and all of his friends who are recovering or going through transplants.  Keep little Madison in your prayers, she's an adorable 11 month old little girl with Tay Sachs who is going through the grueling process now.   

Here's the link to the NYTimes article...

http://www.nytimes.com/2006/08/24/nyregion/24disease.html?_r=1&adxnnl=1&oref=slogin&adxnnlx=1156424564-qziXSRUTX7ECpcI9kNa80Q

Aetna, are you listening?

Well, we've been "stranded" on Long Island since early July....hoping that Aetna would come to their senses and continue paying for Benjy's therapy and nursing.  So far, despite the letter writing campaign and now an appeal to the press, they've only come back (after 18 days of our waiting) with an agreement to pay for 10 hours of nursing for the next 90 days...no therapy.  So, Benjy continues to go without his much needed therapy..."thanks" to Aetna.  We really appreciate all of the letters that have been written, and now appeal to you to keep on writing!!  Please check out www.dearaetna.org for the latest info.  We're pretty hopeful that there will be some major press coverage, hopefully that will change their minds!  In the meantime, we have applied for NY's Early Intervention and a special Medicaid program that is supposed to help children with special needs...and we'll likely be accepted in both programs, but of course there's a wait! 

And, we want to give a HUGE THANK YOU to all of Benjy's "angels" who have sent much needed donations to Benjy to help us get over this hurdle.  Our friends and family from all over the world...including Moscow,  Alexandria, Houston, Atlanta the UK...and of course New York -- Long Island, Brooklyn, Upper NYC and midtown have been very generous with gifts for Benjy.   Even our friends from our neighborhood in NY took up a collection for Benjy's therapies.  We truly have been touched by all of your support and generosity.

We had hoped that in this posting I would have been able to say, "Aetna changed their mind!" but alas, that's obviously still not the case.  Please keep us in your thoughts and prayers and pass along Benjy's message to everyone you know.  The fact that an insurance company is dictating the health of our child...overruling what his doctors, nurses and therapists have indicated...is appalling. 

Now, for your viewing pleasure, here's a very contented, relaxed Benjy at Gramille and Grandpa's house.  While we're thrilled that he's enjoying himself, we really are hoping to start him working again, very soon.  Thanks for all of your support!

Donations: Please help

A lot of folks have asked how they can help Benjy, Elizabeth and Josh with the mountain of medical-related expenses they're facing.   The answer -- click below, and make a donation.   We can accept credit cards, and will process them using PayPal (a fully secure system, used by eBay, Amazon, and all the biggest web sites).

Just click here to be taken to a secure donation page:

If you can donate, please do.  Every dollar helps. 

please note: donations are not tax deductible.

Yank that Line!

After close to 14 months of having a central line hanging off his chest Benjy is now line-free!  For the parents of the children who have gone through this process, you know what a relief that is!  For those of you who don't know, that means no more dressing changes, line flushes, possible line infections, blood draws.  In addition, you can't get it wet, so that meant mostly sponge baths this past year...certainly no pool. So, we waited a day after the line was yanked and then took Benjy into the pool for the first time in well over a year.  He definitely seemed to enjoy it, even moved his legs and arms a bit...and gave us his attempt at giggling!  The smiles and giggles are becoming more frequent now, still not like the old days, but we've been told that a lot of muscle work goes into one little smile...so it will take time to gain back that strength completely.  Benjy's cortisol levels are normal, they actually have been normal for a while now, but now it's "official"...Benjy is starting to be weaned off the hydrocortisone which is basically the last of the transplant medicines.  He's still on the seizure meds and his supplements, but that's fine with us!  Benjy continues to amaze us.  While his PT Jamie  was on vacation, he surprised our substitute PT, Leslie, with strength we haven't seen before...he actually was standing with very little support!  Take a look....                                                           

      We were all pretty shocked, he did most of the work, and looked like he was putting out very little effort. 

This week, thanks to the generosity of our good friend Chris and Kelsey and Lexi...we'll be going for session one of the ABR therapy that we've hoped to participate in. It's in Norwalk, CT, so we'll be staying with Gramille and Grandpa on Long Island...depending on how Benjy's doing, we'll stay there for the week...and hopefully I can sneak in to cousin Anthony and Jenny's wedding!  Congrats also goes out to Nancy and Kulbir who are getting married in Chicago...wish we could be there!

We also would like to send special thoughts and prayers to two beautiful little girls and their families.  They both have Tay Sachs, one was too far advanced to go through the transplant and the other family is struggling with the decision of whether to put their child through the grueling process.  Our thoughts and prayers go out to you all.

                                                                             

Here's Benjy and Papa, on the first of many excursions to the pool!!  Exciting!!

AETNA ALERT - WATCH THIS SPACE - We are appealing to Aetna's CEO, hoping they will overturn their decisions to cut out Benjy's life saving nursing and therapies.  We are planning to put together a grassroots email campaign...and we'll need your help so check back soon!

THANKS!!!  New York here we come!!!

100% Immune System!!!

The results of Benjy's immune studies are in and yes, our little Superman is officially at 100%!  Now we'll start the vaccine process since his vaccines were wiped out as part of the transplant process.  He'll have an MRI within the next couple of weeks and if all goes well then we get to yank out his central line!!  We're pretty anxious to do that because we think Benjy will really enjoy going into the pool, it will make moving a lot easier and we hope to incorporate daily aqua therapy into his routine as soon as possible.  Benjy continues to amaze us.  He prefers sleeping on his stomach now, which means just about every night Josh and I get to view Benjy's middle-of-the-night show...he continues to push himself up!  The exciting news is that when he pushes up now it's "normal" muscle tone as opposed to abnormal muscle tone that was more of a reflex reaction in the past.  He's also moving his legs more and more and this morning while he was on his swing, with just the slight touch of the occupational therapist, Benjy started to move his own legs...even alternating a pumping movement much to the delight of his OT Ellie!

The past couple of weeks have been a bit stressful.  Josh's dad had a heart attack and then underwent bypass surgery...but I'm happy to say that he's doing really well now.  Josh has been back and forth to NY through it all and on this trip his dad is determined to get Josh to walk with him as he tries to hit a mile marker...pretty amazing after all he's been through!  In other news, my aunt "Nanny" was diagnosed with Myasthenia Gravis, so we've all been frantically trying to learn everything we can about it.  I've found out that the omega 3 oil, glyconutrients, even the turmeric that Benjy is taking also are good  for MG interestingly enough.  If anyone has information they'd like to share, please email me at ehlinko@aol.com or post it directly on Benjy's site. 

On the good news front, my brother George and his girlfriend Nicole got engaged...yay!  Josh's cousin Leah and her fiance Brian are getting married this weekend...yay!  My adorable niece and god daughter Kate was christened last weekend...my little cousin Tanner turned one last weekend...and my brother John gave an amazing speech at a conference on stem cells this past weekend!  Check out the new photos on Benjy's site, they're of cousin Kate...finally!  Also, to find out more about what John is up to, check out Benjy-inspired Stempac.org.

Now for those families who have gone through what we're going through you know how financially devastating it can be.  We  obviously are determined to do everything we can for our precious Benjy, no matter what the cost.  However, we're really starting to run out of resources at a point in which Benjy is really starting to progress.  We're very anxious to start him on a new form of cutting edge therapy in early July, but that will cost us $8,000 a year, in addition to all of the other expenses.  If you know of any organizations that offer grants and financial assistance to families in our situation I would greatly appreciate hearing from you!  Please email me or post it on the site.

Thank you so much!  Now for your viewing pleasure, here are some more photos of Benjy "in action"!!

Here's Benjy in his "batting cage" again.  This time notice how he straightened his legs out too...basically in a push-up position!

Benjy still loves his swing!!

Thank you again everyone for your continued support, prayers and good wishes...for Benjy and for our friends and family who are in need of good thoughts.

Look at me Papa!!

FINALLY....after seeing Benjy struggling to pick his head up on his own a number of times, Josh got to witness Benjy effortlessly lifting his head up on his own and looking around.  It happened at around 5:30 this morning.  Benjy continues to get stronger, and as you can see from the attached photo...while I helped him slightly, Benjy picked his head up and held it up while in the "batting cage".  He also is showing more interest in his surroundings...here he's not only working hard to keep his head up, but looking at some of the toys that we have hanging in front of him...

Go Benjy Go!!!  Also great news...the EEG that Benjy had to go through as part of his 1 year studies showed NO ACTIVE SEIZURE activity!!!  YAY!!!!  He's been on Lamictal, but still a low dose and he's not nearly at therapeutic levels yet...so is it the low dose that's helping...or the pharmaceutical grade omega 3 oil???  Hmmmm....whatever it is, we'll take it!!

Benjy's cousin Marie and some of her friends came by to visit Benjy last night...Marie just graduated college...CONGRATS!!!  Ahhh...I remember playing "dress up" with her when she was just a little girl!!!  Happy Birthday Uncle John who is celebrating a birthday today...not quite the "big one" but getting REAL close!!  Here are some more pictures of Benjy...one in his new swing that Gramille and Grandpa got for him...good news is it's just a plain old "normal" Little Tikes swing on a hammock chair swing stand...not a "special needs" swing...so keep your fingers crossed that Benjy continues to progress nicely!!  There's also a picture of Benjy relaxing to some nice music...we're trying to expose him to more music, we think music therapy will be a very good therapy for him too.  Thanks again for all of your good wishes, thoughts and prayers.  And we're really happy that our friends Frankie and Cooper are out of the hospital and doing well...send some good thoughts their way.

HAPPY FIRST RE-BIRTHDAY BENJY!!!

It's official!!  Today marks one year since Benjy received his life-saving umbilical cord blood transplant.  While we've struggled with a lot of things this past year, today the struggle focused on what to call today.  One year transplant anniversary?  Benjy's Aunt Wendy, Uncle Mike and cousins Alisha and Leah suggested the following ...happy 1st 2nd birthday; happy 1st transplant anniversary; happy 2nd 2nd birthday.  I went with the heading "re-birthday" since the transplant actually gave Benjy a second chance on life....a re-birth.  We'd love to hear other suggestions since we plan on celebrating "it" for years and years to come!!!  Thank you to everyone for all of your thoughts, prayers, good wishes, gifts, etc., etc. over this past year....everything has helped our little miracle boy.  Next week we'll start Benjy's one year evaluation studies, and hopefully we'll soon be telling you that his central lines were removed and he's started swimming!  And, he's started getting his vaccines so we can go for a visit to NY!  Or DC to see his new little cousin!  So, keep your fingers crossed that all goes well.  We took Benjy for his first Vital Stim session, and believe it or not, he has been less junky since....so it's possible that just one session might have worked a little already.  I have to ask you to keep your fingers crossed again that Aetna will approve the sessions, and do it asap, otherwise they are $300 a pop...ouch!!   Benjy continued to have a good week, despite the fact that what we think are allergies were acting up...and his ears were red at the clinic this week so he's now on antibiotics...plain old antibiotics, no IV drips, etc.  Phew!  Despite it all....Benjy gave a real smile last night, still not the open mouth grin of the past, but the closest to it in over a year!!  Some kids take 4 years to smile post-transplant, so we're hoping this was the start of something great!!!  Here are some pictures...we hooked a bubble maker up to a switch so Benjy can start to try to operate toys with his limited mobility.  He is slowly working on it, and today he did manage to hold down the switch with only 2 fingers and lo and behold....bubbles!!  He definitely seemed to enjoy himself!!

    

I was hoping to get a better picture of Benjy's shirt...it says, "They'll make a movie about me someday"....I'm sure they will!!

Happy Mother's Day to everyone!!!