Help Daisy Abruzzo fight a mystery illness!

For: Abruzzo family
Millbrook, NY
Organizer: Friends of the Abruzzos
Help Daisy Abruzzo fight a mystery illness! (Abruzzo family)
of $50,000 goal
49% Complete
Raised by 173 donors

The Story

On Tuesday, September 13th, the call came: “Something’s not right with your mom.  We think you should come home and bring her to the ER.”  First Daisy had just been feeling “droopy” and was losing weight, but then colleagues noticed that she couldn’t do simple tasks, like turning on a computer or unlocking a door.

Everyone dreads that call, but in Daisy’s case, it came out of the blue.  She was an active woman, and except for a nagging cough, she seemed to be in great health.  She had just traveled to Indiana and North Carolina.  Although she was “retired,” she had taken on a part-time job managing the religious education programs at her parish.  She was eagerly looking forward to the birth of her second grandchild and planning to learn ancient Greek in her spare time.

Daisy was not convinced she was that sick, but she went to the ER.  She was admitted, but they were initially not concerned.  But strange things popped up in her blood work, including a possible autoimmune condition, so they kept her overnight for observation.  Doctors ordered an MRI, but it did not seem urgent.  When they finally did the MRI on Friday, they tentatively planned to release her the next day—since despite increasing fatigue and confusion, she could still walk, talk, and eat.

Then the MRI results came back: a “shower” of infarcts caused by mini-strokes all over her brain—both hemispheres, left, right, front, back.  Not only was this atypical (strokes usually concentrate in one area), but doctors were also confounded about a cause, as subsequent tests ruled out the usual suspects.  Even more ominously, Daisy began a rapid and “striking” decline—she lost her ability to walk or even stand, and eventually she could no longer sit up or talk or feed herself.  Her blood work continued to show unexplained abnormalities, but nothing connected.  More tests were done, but gave no answers.  The ongoing strokes did not explain the decline; they were only a part of a larger problem.  The neurologist at the hospital had never seen anything like it. (He in fact recommended transfer to a NYC teaching hospital, but her insurance would not cover that).

After several weeks, her condition initially seemed to have stabilized. But then she began suffering abdominal pain, and the doctors discovered that she was excessively bleeding internally from an unknown cause.  She needed five transfusions to make it through the night, and then a few days later had a second bleed (this one less dangerous but in her GI tract).  To prevent further bleeding, doctors took her off Heparin, a blood thinner used to prevent strokes.

Daisy remained in the hospital for over five weeks.  Doctors did test after test to try to determine the cause of her illness, but still turned up no answers.  Only one test remained: a brain biopsy, but it was too risky to try this in the affected areas of the brain. Instead, she was transferred to a skilled nursing facility in the hopes that she can learn to walk again and ultimately continue her recovery (or live out her illness) at home.  Because her disease is still undiagnosed, she has no prognosis.  The family does not know what medical challenges she will face in her recovery.  New issues are still popping up (most recently, they discovered lesions on her liver, which will mean more tests).

Some financial challenges, however, are already apparent.  Medical bills are piling up.  Even after Daisy  is released from rehab, she will require ongoing nursing assistance.  Her home is not wheelchair accessible, and In order for her to live at home, the family will also have to complete substantial repairs and renovations (including a new entrance and ramp).  In the long term, if Daisy recovers enough, other renovations—such as moving the laundry to the first floor—will be needed.

Just as urgently, her daughter Grace has taken an unpaid leave of absence from her job in Manhattan to move home and care for her parents.  Prior to getting sick, Daisy was also the caregiver for her husband Don, who was mostly homebound due to health issues.  Grace currently has no source of income, and she has already used up much of her savings to help her parents.

Daisy remains a medical mystery, but one thing is clear: the family needs help with all of these expenses.  If you are unable to help financially, please support Daisy and her family with your prayers.

Fundraiser Updates

Posted on January 7, 2017

Posted on January 7, 2017

On December 20th, just in time for Christmas, Daisy came home for the first time since going to the ER on September 13th!  It’s been a long road (with the journey still continuing) but we are so grateful for all who have been a part of her healing and her financial support, and most especially for all who have offered so many prayers for her! 

Daisy is much improved—she is able to walk with the help of her quad cane, and while her left hand is still for the most part immobile, there are signs of improvement.  (The doctor has ruled out surgery but is hopeful that with aggressive therapy she may regain some function).  Many doctor visits are scheduled for the upcoming weeks, including an MRI to look into some new neurological issues.  However, we are very optimistic and so grateful for her miraculous recovery thus far.   

We’re adding some photos from the hospital to the gallery, so that you can see some of the changes!   We were told that she probably wouldn’t live, and then that she would need to be in a home for the rest of her life, and then that she could perhaps go home but would likely never walk or do anything for herself.  We are so happy that they were wrong…

Your financial support has been a tremendous blessing!  While the worst seems to be over in terms of illness, the bills are starting to arrive in the mail and the costs are formidable!  Meanwhile, Grace has formally moved home to the be the full-time caregiver for both parents, which means the loss of two incomes for the family.  Please continue to pray for us as we enter this next phase of recovery.  We thank God for each of you and your families—you are in our hearts and prayers!

Posted on November 29, 2016

Posted on November 29, 2016

Update November 29th: Some Good News

"We've never seen anything like this!"  We heard this phrase so often in the beginning of Daisy's illness, referring to bad news: her rapid and striking decline, her strange blood work, her massive internal bleed etc.  But now they're saying "we've never seen anything like this!" and we are excited.

Daisy's post-stroke rehabilitation was initially a failure.  After a few days there, social workers called to recommend that we look for a place to transfer her, since she wasn't making any progress and insurance was sure to cut her.  But just as we were about to give up, something remarkable happened: Daisy misunderstood her therapist's instruction and stood on her "bad" leg--the one they were sure she would never use again.  It was only for a moment, holding on to parallel bars and with assistance, but amazed everyone there.  It and showed them more was possible than they realized.

Six weeks later, Daisy is showing "more rapid recovery than anyone we've ever seen" following a stroke according to the rehab staff.  She can now walk short distances with the help of a quad cane. She has most of her memory back.  She can speak and eat.  And most exciting of all, Daisy will finally be released to home care on December 1st (after five weeks in the hospital and six weeks in rehab)!  While the crisis is far from over, we are happy to share this good news with you.

Work still needs to be done on the house to make it safe for her to return, so for a few weeks Daisy will go to live with her daughter Margaret in Alabama.  She we hope she will return for good the week before Christmas!

We are cautiously optimistic, but there is still a long road to recovery.   There are still some worrisome abnormalities in her bloodwork, and doctors still have not identified the cause of the illness or the strokes.  While she seems to be recovering well, it’s still unclear what her prognosis is.  Daisy still cannot use her left hand or arm (we hope this will respond to future treatments or surgery from an orthopedist).  Daisy is also now dealing with significant limitations, and cannot yet live independently or provide the care that her husband Don (who is dealing with congestive heart failure) requires.  For now, her daughter Grace is on leave from her job to help provide this care (and has been grateful for all of your help in making this possible!)  We are trying to figure out how we can provide in-home assistance in the future, but whatever we do, we expect that this will be a real financial challenge. 

We are so very grateful for the support that you all have shown us over the past several months.  We still have a long way to go but it has been made so much better with all of your love and your help of various kinds, from food and financial help to visits and prayers.  We could not have made it through this difficult time without you.

Thank you from the bottom of our hearts!  May God bless each of you and your families!

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