Please Help Alex's Family

My nephew Alex is a 9th grader at East Aurora High School. Up until February 17, 2016, he was a happy, healthy 14 year-old boy who was active in sports, playing for two hockey teams, was on the honor role in school, played the cello and enjoyed time with his family and  friends. 
While visiting his grandparents in Florida, Alex complained of a neck pain. Within a few hours he was on his way to the hospital. By the time he got to the hospital he was completely paralyzed from the neck down and on a ventilator.  The doctors determined that he had suffered a spinal arterial stroke, which is very rare, especially for a 14 year old.  There was no accident, no incident, no warning. 
Alex's life, along with his parents' and grandparents', changed overnight. Alex spent a month in intensive care in Florida and two months at the Shepherd Center Hosptial in Atlanta for spinal cord injuries with both of his parents in the hospital room every single day and night attending to his care.  To be with Alex, both of his parents have been out of work for the past six months since the stroke, with no paid leave.  Alex's grandparents had to move back from Florida to New York to help take care of Alex's 11-year old brother, Zack.
Many areas of Alex's and his family's lives will require sacrafices and changes to accomodate this new way of being.   Alex's mom will stay at home to be one of his caregivers.  The dining room is now a substitue hospital room. Alex will need 24/7 assistance with every aspect of daily function including eating, drinking, bathing, bladder and bowel control, brushing teeth, scratching his nose, changing clothes ... even breathing for the rest of his life.  Alex will require a lot of assistive services and devices for things all of us take for granted. To be transferred from his bed to his wheelchair he must be hoisted with a lift.   To breathe he has a trach tube connected to a ventilator.
By the good graces of God, the love of our family and those who have been assisting us and praying for us, we hope to regain the most reasonable life for Alex and the rest of our family. Thank you to all of those involved who are thinking of those in need. You never give much thought to this type of assistance ever being needed, and being needed on a constant basis, until you live it yourself. The family will be humbly grateful for any help to cover the many costs that are not covered by insurance, including the many personal expenses accrued due to this heartbreaking, life changing event.  Thank you also for all of your prayers!

Below are pictures of Alex's new life followed by pictures of Alex, family and friends from before the
stroke.
Paralysis generates great risk of developing pressure sores because you cannot move to shift your body weight. Pressure sores can lead to very serious complications.  Alex must be turned at regular intervals every day (and night); and requires a special mattress.
Getting out of bed in the morning and back into bed in the evening is not a quick process and requires at least 2 people.
Proper adjustment in the power chair is just as important to prevent pressure sores and pain.  Alex cannot shift himself once in the chair.
Alex cannot breathe on his own.  He breathes using a ventilator, a machine that moves breathable air into and out of the lungs. The ventilator runs on batteries when Alex is in the chair.  The bag on his leg collects urine which must be periodically emptied since bladder and bowel control has also been lost.Because Alex cannot cough on his own nor move around which dislodges materials in the lungs, he must have the fluids in his lungs suctioned out by a machine called a cough assist several times every day (including at night time).
Therapy, therapy, therapy is very important but it can also be painful for Alex.
Alex controls his power chair by "puffing and sipping" into a tube called a sip and puff.
Zack, Alex's younger brother, reading a story to his brother.
Zack feeding Alex a snack.  Alex relies on his friends and family for all of his needs, even the little things we all take for granted. 
Getting a drink from Dad.
Celebrating your 15th birthday with a fever :(  No fun. Paralysis causes increased risk for different infections. Alex's vitals must be monitored regularly.Alex needs to tilt his body periodically throughout the day to help control his blood pressure which gets out of whack from his body not moving around.

Before the stroke Alex loved playing hockey!  He played on two teams.
He enjoyed playing the cello with his brother and Grandfather.
Enjoyed activities and friendship with his friends...


Thank you for taking the time to read about Alex!