Born with a Rare X-linked Disorder,Wiskott-Aldrich Syndrome, Joe Aucella has been fighting the effects of this disease most of his life. This condition is so rare, only one in one million men are diagnosed with it. As children, Joe and his brothers were involved in many studies that have been documented in the New England Journal of Medicine. Due to the many complications of the illness they were told they would only live to the age of sixteen. They spent most of their lives in and out of hospitals many times spending months, including many Holidays, although daunting, they learned many life lessons, appreciation for life, courage, determination,and Integrity, having compassion and being humble and Never, ever, giving up !! finding value and appreciation of there childhood hospital stays, by seeing it through different eyes... taking a bad situation and creating something good. Just a glimpse of their genuine, appreciative qualities.
Determined to beat the odds they went through various treatments, doctors visits, and years of studies contributing to isolating this X-linked gene. During this time of unexplained answers and limited resources; their parents never gave up hope. Unfortunately, one of his brothers, John Paul, passed away at the age of 27
When our friend, Tina, began dating Joe, he tried to discourage her due to his uncertain future. But love won and Tina did not give up on him.
In November 1990 Joe's kidneys failed and he was put on dialysis three times a week for the next four years. In April,1994 he received a kidney Transplant and soon thereafter started a family and cherished the time.
In 2006 his Transplanted kidney failed and he was rushed to Boston for an emergency Nephrectomy. One week later he was back in the hospital with severe pain. The doctors were unsure of the cause and decided to do an exploratory surgery. Following surgery, Joe awoke with an ileostomy bag that he would have for the next six months.
Trying to keep pace with his full-time job and dialysis, he was determined to find a way to have "Quantity" time at home. Not being a candidate for peritoneal dialysis, he became amongst the first to be Certified in self administration of dialysis , allowing him to have his own Hemodialysis machine at home.
Receiving dialysis at home, as opposed to in the hospital, meant six times a week versus three. But, this allowed him to spend time with his wife and sons, Jordan now 16 and Nicholas now 13 to assist with homework, and engage in family duties/activities, etc...
Work has always been an important and rewarding part of Joe's life.
Director of IT, his philosopy was puting great value in his people and the team. The importance of knowing and understanding the business and building a team of solution Architects.
With his perseverance, he became the recepient of the most Prestigious AWARD that the company had to offer, that recognizes those who embody the highest standards of excellence of the company's network of more than 7,000 associates. The first and only time granted to an IT individual, for excellence through out his career.
He was very grateful to be able to manage the dialysis at home. This routine continued for the next three years until, miraculoulsy, Feb, 2009 he recieved a call about a new kidney and ultimately he received a successful Transplant.
A few years later he was diagnosed with an aggressive Rare form of T-cell, Non- Hodgkin's Lymphoma. He has been through two separate rounds of treatments for lymphoma. His recent P.E.T. scan show that it has reared its ugly head once again.
He is now being treated with stints of aggressive inpatient chemotherapy at Mass General Hospital in Boston, MA, to be followed by an autologous stem cell transplant.
In the midst of everything that he has been through, Sept 2012, he received more bad news; losing his loved long time job of almost thirty years.
Their two sons have grown up living with their dad's illnesses. Keeping the laughter, joy and hope, is what keeps them all fighting. Joe's dream is to have his "journey" published and ultimately made into a movie.
He is an intelligent, well-spoken, kind and gentle man that we have all fallen in love with. We hope that we can help this incredible family pay for medical and other expenses along the way.
His pride does not want him to become a charity case, however, the weight on his shoulders has become unbearable. We love and admire Joe for his strength and courage and need help to support this wonderful family who has endured so much
Thank you all for your kindness.
- Jean Mitchell
- scott douglas
- brian peck
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more