Isabella Nicole Kurek
2009 & 2010

Our story left off in the spring of 2009.  Isabella’s battle would continue for another year and a half.  It would take me an additional six months to find the peace and the perspective to write this, the final chapter of Isabella’s Stor

Before writing each update of the story, I begin by re-reading the portions I have already written.  Each time I can see how much has changed in both Isabella’s condition and my own frame of mind.  As I read today, it is clear to me there is one topic which lacks congruity.  In the early pages of the story, I refer to Isabella’s father as my husband, but as the story progresses, he is mentioned less and less, eventually as a vague “we,” and ultimately, simply as “Isabella’s Father.”  Later in the story, I begin to once again refer to my husband, his family in Maine, and our other children.  The truth is that our marriage was struggling shortly after Isabella’s birth and our different opinions regarding her care served as a final wedge between us.  Like far too many couples dealing with the death of a child, our differences would lead to divorce.  Halfway through the story I married my friend, and long-time source support, Harlan.  He brought to the marriage his son and daughter, Reilly and Emma.  Together with my other daughter, Natalie, we have formed a comfortable, blended family.  I glossed over these aspects of my life during the earlier portions of Isabella’s Story because I felt they were irrelevant to what I was hoping to accomplish.  But I see now that it may lead to some confusion and, more importantly, that our new family had a huge, positive impact on Isabella’s life.  She loved playing with both of her sisters and being read to by her older brother.  Though my relationship with Harlan has evolved over the years, he has stood by me from the beginning and loved Isabella as his own.  She would happily confess she had two fathers, Daddy and “Hala” and they both loved her very much.

We all enjoyed our trip to Orlando in the spring of 2009.  Isabella was, in fact, able to travel with us to Maine once again that summer, although her outdoor activities were diminishing.  She didn’t want to leave the house in the woods.  Once we tried to pack her up and take her out to dinner and she put up such a fuss that we had to return to the house early because she couldn’t keep her oxygen saturation up and needed constant suctioning.  It turns out that would be her last vacation.  During the summer of 2010, she was too weak to make the annual trip to Maine as well as the SMA picnic at Camp Harkness.

Isabella’s condition was quickly declining throughout 2010.  What was left of her strength and mobility was deteriorating.  The previously described episodes of respiratory distress became an almost daily occurrence.  We worked closely with her pulmonologist to increase her ventilator support, but we could see we were fighting an uphill battle.  Knowing how much Isabella disliked being in the hospital, it was at this time that we began to consider establishing a DNR protocol.  Being a minor, it was impossible to create a legally recognized Do Not Resuscitate Order, but with the support of our pulmonologist, we were able to come close.  We needed something to protect her should she go into arrest if we weren’t home and she was under the care of her nurse.  With so many close calls, we felt confidant there would eventually be an episode of respiratory distress that would progress to full arrest.  We were terrified that if this happened while under the care of a nurse, 911 would be called and paramedics would break every bone in her chest trying to do compressions and that she would end up in the hospital on life support.  With the threat of liability and lawsuits, there was no way the nursing company would allow their nurses to do anything BUT call 911.  It was expressly for this reason we needed some sort of DNR, legally recognized or not.  Our pulmonologist created a protocol to follow in the case of an emergency, describing our wishes.  We sent a copy to the nursing company, our pediatrician and posted a copy over her bed at home.  At that point, all we could hope for was that those involved would respect our wishes.  In the end, we were glad we had it.

Around the same time we decided to pursue a DNR, we also started to think about contacting a funeral home.  This was one of the hardest things I have ever been faced with in my life.  For some reason, even thinking about funeral arrangements made me feel like I was giving up on Isabella.  Logically, we knew there would come a time when it had to be done, but it just felt so wrong.  Before we could make formal arrangements, we first had to reach some agreements as a family.  I had strong convictions about what I wanted for Isabella and was afraid the extended family would criticize me for my choices; however, I had no intention of being influenced.  Luckily there was very little debate.  I don’t think they agreed with my choices, but they at least recognized and respected the fact that the decisions lied solely in the hands of Isabella’s father and me.  Once her father and I were in agreement, it was up to me to make the final arrangements.  We chose Hoytt Cognetta Funeral Home in Norwalk and my husband and I spent an entire morning with their funeral director, Danny.  He was so patient, understanding and kind.  We told him our situation and what we wanted for Isabella and he helped us accomplish it beautifully.  I would like to specifically thank Danny for all of his support.  He helped us to understand that by starting this process early, we were in no way conceding defeat.  There are so many difficult decisions to be made.  It was hard enough at the time; I can’t even imagine how much more difficult it would be to go through this process in the days after a death.  For as painful as it was to walk through those doors and start the planning, I know now that it was the right thing to do.

As Isabella became weaker and more painful, her manual wheelchair was no longer able to keep her comfortable.  Most of her time outside of her bed was spent in this wheelchair and we could see she was outgrowing it.  For a very long time it served us well and we will forever be grateful to the school system for allowing Isabella to use it; but it was time to upgrade.  We visited our old friends in the rehab department of the CCMC in Hartford to evaluate Isabella for a new chair.  These were the same people who earlier found a way to surprise us with her power wheelchair.  Once again, they worked so hard to find a perfect chair for Isabella.  She was fit for a brand new manual chair, complete with a customized, foam-molded seat cushion.  Her scoliosis had become so severe that she needed a seat cushion and back that would mold to her shape perfectly.  They pulled some strings and built her a fantastic, customized chair.  I will never forget the smile on her face the moment she slipped into that chair for the first time.  She was so tired of test fittings that she cried not to be moved again from her old chair, but the tears disappeared and her face lit up in a beautiful smile instantly when she felt the comfort of the foam-molded seat.  I only wish we would have done this so much sooner.  Sadly, we still had to secure funding for the $8,000.00 chair before we could take it home.  Through combined donations from the supplier, CCMC, and a local charity, the Molly Ann Tango Memorial Foundation, we were able to bring it home within a few weeks.   We are so grateful to everyone who helped make this chair possible for Isabella; it made the last three weeks of her life infinitely more enjoyable and comfortable. 

My husband and I were able to see Isabella was slowly becoming weaker and shared a deep-seated feeling that time was growing short.  Our children knew SMA was a fatal disease and that Isabella would eventually lose her battle, but they also possessed the beautiful naivety and innocence of youth.  They continued to see her simply for what she was, their little sister.  They didn’t see the deterioration we were forced to confront.  We were so worried that if Isabella passed suddenly, our other children would feel shocked and unprepared, not understanding how things could change so suddenly, when in reality, nothing about her deterioration was sudden. For this reason, we decided it was time to have a serious talk with the kids.  At the time, Reilly was 12, Natalie was 10 and Emma was 8.  Starting this discussion was like walking into the funeral home all over again.  It felt like we were giving up, but even more difficult than that was the feeling of shattering your children’s innocence by tearing down the protective blinders they had built up.  We reminded them how sick their sister really was and how close the end could be, how we were all doing the best we could to help her, and how despite that,  we were going to lose her.  We answered their questions as best we could, but mostly we all just cried together.  Initially, we hoped this would be a conversation we would be forced to revisit every six to twelve months, but as it turned out, once was enough.  We had this talk less than a month before their sister passed, and I am so thankful that we did.  One of the things that still hurts me the most, and probably always will, is how difficult it was to share the news with her siblings on the day of her death.

Isabella’s last social event with family and friends was a “Purse Party” organized to help raise the remaining money needed for her new wheelchair.  The party was a lot of fun and, more importantly, provided many people (unknowingly) with a final opportunity to visit with Isabella.  In the days leading up to the party, Isabella developed another respiratory infection and became quite lethargic.  There were a few episodes of respiratory distress and loss of consciousness.  Once again, we tweaked her antibiotics and her condition began to improve.  By the day of the party, she was feeling more like her old self and was very excited to see everyone.  She still tired very easily and had to make an early exit, retiring to her room to rest.  The party was held Friday, October 8th.

Isabella seemed back to normal on Saturday and Sunday following the party, but by Monday night she was starting to feel poorly again.  She asked me to sleep with her that evening, which I did.  We snuggled and talked deep into the night; eventually she fell asleep on my arm.  It was a beautiful night, bringing me back to the early days, when we spent every night locked in each other’s arms.  On Tuesday morning, I left Isabella sleeping and went to work after her nurse arrived.  I received a call around noon.  The nurse was concerned because Isabella was still sleeping and she wondered if she should wake her up.  We decided to let her sleep, knowing she was still fighting an infection and could probably use the rest.  Tuesday evening I gave Isabella her bath and she quickly wanted to go back to bed and nap.  This was unusual, but once again, we gave her the benefit of the doubt and let her rest.  She seemed very comfortable, but just looked so exhausted.  Little did I know I would be tucking her in and kissing her goodnight for the last time.

Wednesday morning, October 13th, 2010, I awoke to the simultaneous beeping of my alarm clock and Isabella’s pulse oximeter.  As I got up to check on her, I could see her ventilator and feeding pump were still functioning normally.  Without her ventilator alarming, my first thought was that her pulse oximeter sensor had become detached from her foot.  She was lying on her side, facing the wall, as she was almost every morning.  I shut off her alarm and moved to roll her onto her back to begin suctioning.  The first thing I noticed was that her body was very relaxed and there was no tension in her muscles.  Usually in the morning her joints and muscles are very stiff and it is difficult to reposition her.  The next thing I noticed as I rolled her over was her pale complexion and just a hint of purple across her lower lip.  My heart immediately hit the floor and I called for my husband.  We reached for the stethoscope kept next to her bed and quickly realized she no longer had a heartbeat.  At that moment, time slowed down and everything that followed seemed to be happening to someone else, almost as if we were watching from the outside.  None of it seemed real.  Could this really be happening?  Right here?  Right now?  She looked so peaceful and comfortable… like a little angel… like she was just sleeping.  I couldn’t believe it was just last night that I had hugged and kissed her goodnight, and this morning she was gone.

The immediate events of that morning are too personal to detail, but suffice it to say, we found a way to do what needed to be done.  Everyone we dealt with, from the paramedics, to the fire department, the police department, and eventually the funeral home, were all so compassionate and comforting.  One of the big uncertainties of that morning was whether or not Isabella would be allowed to go directly to the funeral home, as we hoped, or if the medical examiner would insist on an autopsy.   Partly because of our existing DNR and the letters written by her pulmonologist, the medical examiner agreed with us and allowed her to be taken directly from her bedroom to the funeral home.

Later that afternoon we went to the funeral home to make our final arrangements.  Having already done most of the planning, we only had to deal with a few details.  I am so happy we planned ahead, regardless of how difficult and painful the process, because I can’t even imagine trying to make those decisions on that Wednesday afternoon.  That evening we gathered the immediate family for dinner.  There wasn’t much talking, but we tried to answer the few questions the kids had for us.  Mostly we all just sat together in disbelief.

Isabella was cremated a few days later, in a small, private ceremony.  We immediately began preparing for a larger, more public memorial service to be held the following month.  Isabella’s nurse and our family friend, Michelle, and my sister, Anna, helped collect photos and prepared beautiful displays and collages for the memorial.  A wonderful video montage was made for us by MJ Purk, a fellow SMA patient with her own amazing story, whom we have known since Isabella’s diagnosis.  The memorial was intended to serve more as a celebration of her life, rather than a mourning of her death.  Despite the tears, the many smiles and happy stories shared over those few hours suggest to me that we were successful. 

We thought, at that point, our battles with the insurance companies and home care providers were finally over.  They weren’t.  Within days of her passing, we were sued by Maxim Healthcare for the nursing costs previously described.  After years of non-action, the timing was appalling.  We were ultimately able to compromise and settle the claim.  To this day, almost a year after her death, we still receive random bills in the mail for everything from laboratory tests to nursing fees.  It seems there is no end in sight.

For us, there will never be an end to Isabella’s Story.  She touched our lives and shaped our perceptions of the world in so many ways.  She reminded us of what is important and what isn’t.  She taught us about beauty and love, as well as pain and sorrow.  She gave us all the opportunity to show our true spirit, sometimes for the better, sometimes not.  We saw the amazing compassion and generosity of complete strangers, as well as the fear, anger and insensitivity of some of those closest to us.  To some degree or another, Isabella impacted the lives of everyone she met.  She was a daughter, sister, niece, cousin, grand-daughter, friend and patient.  We will all miss her.  She will forever be my baby-girl and will always be with me.

During Isabella’s life and in the months to follow, I have met many families living with SMA.  I know firsthand the emotional and financial toll the disease imparts.  I wrote Isabella’s Story in hopes of sharing my own experiences so that they may help other families dealing with the disease.  As an extension of this, I decided to create the Isabella Nicole Kurek Memorial Foundation, a nonprofit organization with a goal to provide support, care and comfort to those families of children living with SMA.  We are dedicated to raising local awareness of the disease by sharing our own experiences, while honoring the life, love and memory of our daughter, Isabella.  The foundation can be contacted online at  Please visit, if you can.  Isabella’s Story and photos can also be seen on her personal website at

Thank you so much for taking the time to read our story.  Life is short; remember to cherish those closest to you and don’t hesitate to tell them you love them. 

Joanna & Harlan McLaughlin