Our Little Angel:
Joseph DeFacci

Joseph Edilio DeFacci’s story begins on February 24, 1993 at 2:10 pm. Our first child came into this world without too much fuss and was instantly loved by his Mommy, Daddy, and all of his family. We knew from the moment Joseph arrived that he was special. Not just because he was our first, but because there was just something special about him. We couldn’t quite put our finger on it, but we figured it would come in time.

As the months passed, we grew to love him more than we ever thought we could love another human being. We simply adored him. Joey had beautifully expressive eyes (eyelashes that went on and on!) and a terrific disposition. Family and friends would remark on his angelic smile and say, “you are so lucky to have such a wonderful little boy. He hardly ever cries!”

In August of 1993, Joey developed a cold and cough. No matter what we did, he just couldn’t seem to shake it. He had this awful wheezing cough and kept vomiting up everything he ate. His eyes started to cross and he began having problems keeping weight on. We started seeing a Lung Doctor who started Joey on breathing treatments. Joey also had a reflux problem. The Doctor started him on some medicine and reflux precautions.

At first, we were overwhelmed. What happened to our happy, healthy child? It seemed that it was almost overnight that everything changed. But we adjusted, Joey adjusted, and life went on.

In October of 1993, Joey aspirated and was taken to the local E.R. Once Joey was stabilized, he was transported to a Pediatric Intensive Care Unit at one of the larger hospitals in the area. He was in the hospital a week. We could not wait to bring our little boy home and pamper him with as much love as we could give him. We wanted to erase that terrible scare right out of Joey’s memory!

For a few more months, life went on. Joey still coughed and wheezed. His eyes were still crossed and he still was slow to gain weight, but we felt blessed that he survived the whole aspiration ordeal. Meanwhile, our beloved little boy still smiled his brilliant smile and never let anything get him down. Our love and respect for this incredible boy grew and grew. He was our angel.

It was January 21, 1994, that ended our idyllic daydream that all would get better. Whatever tenuous life we had gotten accustomed to was over. Once again, Joey aspirated and was rushed to the hospital. This time, Doctors noticed that Joey’s liver and spleen were grossly enlarged. Complications set in. While tests were being run to determine what was going on with Joey’s “bigger picture”, he developed a lung infection. He was on a ventilator for 5 weeks. He spent his first birthday in the PICU, with a tube down his throat and a rash (from an allergic reaction) covering every inch of his body. Yet he still managed to give anyone who came to his bedside smiles around the tube in his mouth! What a kid!

As for the bigger picture – a bone marrow aspirate was ordered. In February of 1994, Doctors told us that the results of the aspirate showed some Gaucher’s cells. A Geneticist was called in to give us a synopsis of Gaucher’s Disease. Blood was taken from Joey and sent out for DNA testing. Afterwards, we demanded some answers. What we just heard, quite frankly, scared us to death! The Doctors were being evasive as to which type Joseph had. Finally, scared and frustrated, we demanded some answers. The head of the PICU sat down with us and told us that all signs indicated Joey had Type II Gaucher’s Disease. We were absolutely devastated.

Numbly, we went back to Joseph’s bedside. We were just told our son was going to die. We were told that there was absolutely nothing we could do, nobody we could really talk to that could understand what we were going through and that we would probably never get him off the ventilator – let alone home again.

We sat by his bedside for days. We cried, we prayed, we bargained, we absorbed. We begged God to let us at least get him home to die. We promised Joey that we would do everything we could for him, we’d make him as happy and comfortable as possible. With God’s help, we’d make the very best decisions we could for him. We also promised him that when the time came and everything else possible had been done for him, we’d let him go.

It was Joey (and God) who decided that he wasn’t done quite yet. He still had more smiles and love to give to us. He began to improve. In April of 1994, after being in the hospital for 12 long weeks, we finally took our bundle of joy home. Family and friends eagerly welcomed Joey back home. It was one of the best days of our lives.

Joey went home with a trach, oxygen, a central line surgically implanted in this chest, and a button in his stomach to give him his food and medicines. Tons and tons of medical equipment had been delivered before we brought Joey home. Nurses were scheduled to help us cope with the considerable change in Joey’s care. Once again, we did our best to adjust and enjoy whatever time we still had left with Joey. We had some wonderfully happy days, some extremely terrifying days, some very sad days, and some very lonely days. But each day that passed that Joey was still part of our lives, were considered very blessed days in our book.

Joey adjusted the best out of all of us. We finally began to put our finger on that feeling we had about Joey’s “specialness” when he was first born. God blessed us with a little angel to teach us about love, faith, and devotion. Even though Joey’s time with us was to be short, he enriched our lives beyond words.

During 1995, Joey began experiencing small seizures. In October of 1995, Joey made another trip to the hospital. During this visit, Joey coded. Doctors and nurses worked very hard to revive their favorite little prince of the PICU. They were successful. Joey once again proved how strong and resilient he was. He was not ready to leave us yet.

After this hospital visit, Joey added yet another new piece of equipment to his daily regime. He was on a ventilator full time. Once again, we all did our best to adjust to the growing needs of Joey’s medical care. Joey continued to bear everything with grace and dignity that just astounded us.

In December of 1995, knowing Joseph’s time here with us was coming to an end, the Make-a-Wish Foundation of Northern Illinois blessed us with family vacation to Disney World. We packed up Joseph, got him on a plane (ventilator and all) and flew to one of the most magical and unforgettable times of our lives. Joey met his favorite, Barney, at Universal Studios and his face lit up like a Christmas tree when Barney came over to say “Hello”. We were all in tears!

After a wonderful holiday season, Joey began having more and more seizures. They were becoming uncontrollable. Doctors were having a difficult time successfully medicating Joey’s seizures. Soon, the seizures began taking over Joey’s little body. Some of the experienced Intensive Care nurses, that we were fortunate enough to have with us at home, struggled to battle Joey’s seizures. They were even getting scared and overwhelmed.

During January and February of 1996, Joey began to rapidly deteriorate. He was on so much seizure medication that he was heavily sedated most of the day. His periods of alertness became shorter and shorter. His quality of life became less and less.

During a hospital visit in March of 1996, Tom and I (with a lot of help from God) made one of the most difficult and painful decisions we’ve ever made. We needed to follow through on the promise we made to Joey. It was time to let him go. It was time to finally give him those little wings he so deserved to have.

On March 21, 1996 at 3:00 pm., Mommy and Daddy held little Joseph as he peacefully and happily made his journey back to where he belonged. He died without ever saying “Mommy” and “Daddy”, but we knew he loved us just the same. Our earthly angel was now our heavenly angel. Though our tears and overwhelming sadness, we were so incredibly happy for him. After we went out to comfort our families and share in their grief in the loss of this beloved little boy, we went back in to say good-bye to our son. The nurse had disconnected him from all of his tubes and wires. She had cleaned and dressed him. We were overwhelmed at his peacefulness. It was such a comfort to see him so relaxed and comfortable. He looked better than he had in months!

We spent the next few weeks trying to adjust to life without Joseph. It felt very empty and very strange. During this time, we found out that I was expecting our second child. We did our best to take it in stride, as Joey taught us to do. Sometimes we did, other times we panicked!

In May of 1996, we had our genetic testing done. In June we found out that our new baby was healthy and Gaucher free! On November 29, 1996, with Joey’s picture beside my bed, Joey’s brother, Thomas Joseph (T.J.), was born. We just knew Joey was up in heaven proudly grinning from ear to ear when his little brother was born. T.J. knows that his big brother watches over him and is his own personal Guardian Angel. We wish that they could have met. T.J. would have loved him as much as we did and still do.

Today, with Joey gone almost four years, we have adjusted about as much as we are going to with life after Joey. We remember mostly the happy times and T.J. hears about his brother all the time. We still miss him and feel life will never be the same without him. But knowing Joseph, he would want us to keep going forward, keep the happier times in our memory and give his brother all the love and best things in life he was never able to fully experience.

We look forward to being a part of the Childrens’ Gaucher Research Fund. It may be too late for our little Joey, but we hope that other children who experience Type 2 and Type 3 Gaucher’s Disease will have more hope that we did. We hope their families don’t have to hear “I’m sorry, there is nothing we can do for your child. Just pray for a miracle.” We believe the Children’s Gaucher Research Fund is that miracle. We will do what we can to help with the cure for this devastating disease and hope that a cure is found soon. May God bless you.

Tom and Bobbie DeFacci
New Lenox, Illinois, USA