The battle to save our son’s life was long and difficult. This battle ultimately ended with the pain of losing him to Children’s Gaucher Disease, Type 3. However, our son’s soul will live on, as will the souls of all children who have been taken by Children’s Gaucher disease. Their souls give us the encouragement and strength to move forward, and to ensure that we continue our quest to find a cure.
Our story is just one family’s experience. It is not meant to glorify Gregory, or to set our family’s experience apart. Others have lived with a portion of our hardship, and some have lived with far more. The constant we all share, is that none of us can predict what challenges life will provide.
Life Is Unpredictable
It was December 21, 1993, at 11 months of age Gregory was admitted into the hospital for testing to determine the cause of his recent health problems. For those two days we shared a room with a gentleman and his three-year-old daughter. Just weeks prior she was brought to the doctor for a routine visit due to a 102-degree temperature. Within days it was determined she had leukemia. The look of shock, disbelief, and pain was evident on her father’s face as she received her first doses of Chemo Therapy. I remember thinking, “what would it be like to learn your child has such a serious and potentially fatal disease”. At that point I still believed Gregory’s diagnosis and resolution would be fast and painless. Our lives had not endured any major tragedies, and exposure to such was somewhat limited to the likes of “60 Minutes.”
Two weeks later Gregory was diagnosed with Gaucher disease (pronounced “Go-Shay). It was explained that this was an in-born error of metabolism – a genetic disease. Like other metabolic diseases, it is inherited, in that both mother and father carry the recessive trait for the disease. We are all carriers of something, and the odds us meeting, getting married, having children, and, both being carriers of the same recessive genetic disorder are not high. Once we do meet and get married, there is only a 25% chance that our child would receive the recessive trait from both of us, and thus, not be just a carrier but have the disease.
When this disease is discovered in infancy, as Gregory was, it is always a more severe form of the disease, referred to as Gaucher Type 3. At this point, it was explained, researchers were somewhat limited in their understanding of the disease.
Life is unpredictable. A major tragedy in the health of our son. We were no different than those of you reading this article, except now we were also like those we watched on “60 Manutes”.
Gaucher disease is a genetic disorder, which results in the deficiency in an enzyme, called glucocerebrosidase (pronounced “gloo-ko-ser-e-bro-si-dase”). Gregory was a perfectly healthy little boy, except for this one enzyme. This enzyme helps to eliminate from the body, worn-out or dying cells. Without the enzyme, or a high enough amount of it, these cells are not broken down and rid from the body. The result, they accumulate in various parts of the body and cause problems. They store themselves in the liver, spleen, lungs, lymph system, bones, and in the more severe cases, which affect young children, the central nervous system.
When Gregory was diagnosed in January, 1994, we did our research and found that the National Institutes of Health (NIH) in Bethesda, Maryland, were conducting studies using an enzyme replacement therapy, which is created by removing the needed enzyme from human placenta. Gregory received weekly I.V. infusions of this drug from 1994 through 1996. This was a new drug, and it was not clear if it would be successful on the more severe forms of Gaucher disease, that affect young children.
Gregory’s disease required us to make difficult decisions. Decisions that had to be made based on limited information, with results that were not guaranteed. In December, 1996, just prior to Gregory’s 4th birthday, it became clear that more aggressive action was needed. It was decided, despite the risks, that a bone marrow transplant was necessary. A successful bone marrow transplant offered the greatest hope for an optimal clinical outcome. However, so little is known about Children’s Gaucher disease, that even a successful bone marrow transplant offered no guarantees.
Gregory’s sister, 5-year-old Ashley Rose, also had decisions to make. Though we did not ultimately use Ashley as a donor, it was necessary to test Ashley as a potential donor of bone marrow. We explained this to her, and we allowed her a few days to make her decision. On the morning before Christmas, 1996, she told us, in a shuttering, frightened voice, that she was willing to give her bone marrow to her brother. Her first question was, “when are they going to take the tubes out of Gregory’s chest, and put them in mine.” She had misunderstood, but her love and courage were painfully clear.
Little Gregory succumbed to complications of a Bone Marrow Transplant, and passed away on his sister Ashley’s 6th birthday, April 13, 1997. This day will always be Ashley’s birthday. This day will always be little Gregory’s “Heaven Birthday”.
The Pain of Losing a Child
It is impossible to describe to you the pain of losing a child. If you have children, I am sure you can imagine, how painful it is. Perhaps you have lost a child, and you know the pain. There are times that you cry so hard, you feel you may lose your mind. These four years were a journey of immense pain, and of unexpected pleasures. Four years that we would wish on no one. Four years that we would not give up for anything in the world.
Those first few months in 1994, after Gregory’s diagnosis, were difficult. I remember countless nights, lying in bed, holding my son, crying, and wondering why. One night I had an embarrassing thought. I said to myself, “if God is going to take my little Gregory, it would be easier if he took him now, instead of when he is 4 years old, when we are so much more attached to him”. I was embarrassed even having that fleeting thought. I now thank God for giving us four beautiful years, to become so close to our son. To appreciate who he was, and all that he had to offer. Four years that taught us so much.
Gregory Gave Us Our Strength
It is important to understand how much he had to endure. The multiple operations. A GT tube in his stomach. A central line in his chest. Weekly I.V. infusions of medicine. Innumerable tests at Kaiser Hospital, at the National Institutes of Health, and at the University of Minnesota. Four years that you would think, would make him a sad little boy. This was not the case.
Gregory had a beautiful smile, and a precious little dimple. Despite the difficulty of all of his medical problems, he was a happy little boy. At one point at the National Institute of Health, the doctor said, “do you have any other concerns”? We responded, “Gregory is abnormally happy, all of the time”. The doctor responded, “We have noticed that”. There were not many who knew him, who didn’t marvel at how happy he was, and what a beautiful smile he had.
Gregory had a great sense of humor. During his Bone Marrow Transplant in Minnesota, his hair was starting to fall out due to the Chemo Therapy and Radiation treatments. We decided to shave his head. We told him he was going to be an army man, we dressed him in daddy’s special forces T-shirt, and played Green Beret Cadence music. Before putting him in front of the mirror the nurse warned us, “he’ll probably get frightened, and start to cry.” We lifted him up in front of the mirror, he laughed, rubbed his head, and laughed. His good spirits, and his sense of humor, had an impact on the doctors and nurses who cared for him.
Gregory was one determined little boy. He was speech delayed, and you could just see the determination on his face at speech therapy, to say that word or sentence. He was so excited, and determined to go to school. On the first day of school he got out of the car, grabbed his lunch box, and marched toward the building. His mother quickly locked up the car and chased after him. He turned to her, and in that little independent voice, said “No, Done, Bye”. It was summer, and the family was boating, at 3 years old he had to ride the tube behind the boat. The faster, the better. The bigger the waves, the bigger his smile. The courage he showed enduring his medical challenges, he brought to other parts of his life.
As a parent of a chronically ill child, the sleepless nights, the constant medical care, and the emotional stress, can bring you down, can tempt you with self-pity. When your child rejects hopelessness, shows a resilience and a love for life, you are provided with the strength to rise to the occasion, and live up to the challenge. Gregory gave us our strength.
Gregory Taught Us About Life
Children’s Gaucher disease is rare. Upon Gregory’s diagnosis we did Med-Line searches at Stanford University Medical Library. We learned about the disease and which medical institutions were doing research. We traveled to the National Institutes of Health in Bethesda, Maryland, three times each year. We collected binders full of research papers, notes, and questions. Gregory taught us how capable we could be, and how love could drive us to do so much, in so little time.
Gregory taught us how selfless we could become. All parents know that selfless devotion which grows within, upon the birth of a beautiful child. That selflessness was brought to a peak one Sunday morning in the emergency room at Kaiser hospital in Santa Clara, California. Gregory was “crashing” from a blood infection, however in the emergency room that morning it was yet to be determined. As his naked body lay on the sterile white paper, tired and shivering from fever, I sat on a stool as the doctors and nurses scurried back and forth, in obvious concern. As I drifted off into a dream-like state I had a conversation with God. I asked that Gregory take my health, and that I take his medical problems. There was no hesitation, there were no second thoughts. It was a feeling, a complete feeling of selflessness, never before experienced.
Gregory taught us a new way to fulfillment. Prior to his illness we derived fulfillment from receiving; a new car, a hockey game, a vacation. We soon found fulfillment from giving; research, medical care, therapies. He helped us find the strength to rise to the occasion, and we soon found pleasure and fulfillment in the challenge. Our lives will be forever changed. He taught us to give, is to be fulfilled.
Gregory taught us to have relationships with those we may have avoided in the past. To the person diagnosed with cancer, to call them, not avoid them. To parents of a chronically ill child, to talk about their child and offer support, not try to stay away from the subject that consumes their life. To the person in a wheel chair, to not be afraid to engage in conversation. To the parents who just lost a child, to call on the phone, to give a hug, to drop a note.
Gregory taught us so much about life.
Our Faith Is Stronger Now
After Gregory’s passing at the University of Minnesota, we drove for 2.5 days, home to California. To us, HWY 80 will always be a “trail of tears”. We talked, and we cried. We were so confident that Gregory would have a chance at life. We were so prepared to do what needed to be done. To care for Gregory after his bone marrow transplant. To spend the years of time and effort to help him to be healthy, to help him catch-up developmentally. We wanted this not only for our son, but to be an example for all the other children with his disease. We knew the medical community throughout the nation would be watching, and we wanted to make a difference.
In the back of your mind, you know the day might come, that you lose your child. You have many conversations with God. You beg, you plead, you bargain, you cry. You insist that God show himself, that he sit at the end of your bed so that you can ask, “why”? When you lose your child this process repeats itself, however, with increased intensity. We often wondered how we would react to God if we lost little Gregory. After so many years of hard work, dedication, and love, we were not sure of our reaction.
We lost our little boy on April 13, 1997. Despite our loss, our faith has grown stronger. We are not resentful. We are not bitter. We believe God is good, and we believe God is full of love. You may ask, “you lost your son, who you loved so very much, where is God’s goodness and love”? We believe God is the source of goodness and love, and the essence of such he shows through his children. His children are family, friends, neighbors, doctors, nurses, and people like you. People who have offered so much love and support. Those who acknowledged our battle, and offered kind words of encouragement. The hundreds who packed the church at his memorial service. The Donor of bone marrow. A man who was willing to respond so fast, to give part of his body, to a little boy he did not even know, so little Gregory would have a chance at life. Complete strangers who offered a phone call, a note, or a prayer. So many were praying. Discussions of faith make some uncomfortable. For those I will say that we do not for a moment believe we have all of the answers. For those I will say that, God may not sit on the end of my bed, and there may be a lot of things that we do not understand, but the outpouring of goodness and love has been overwhelming. We believe God shows his goodness and love, through you.
How Do We Cope
Since Gregory’s passing, many have wondered how we cope after such a painful event in our life. Some ask this question, and with some, you can read the question on their face. It is impossible to explain the grief, and the feeling of loss. There is now a void. It is as though half of your body, and half of your soul, have been taken away. Quiet moments are now filled with memories, sorrow, and tears.
A loss such as this can have a devastating effect on ones life. We are well aware of this. We do not feel up to it, and there is a small sense of guilt for doing so, but we must move on. No matter how hard it may be, we will head down the path that we know, is the right path. It is difficult, but like many other things in life, you act it first, and then it becomes a part of you. The legacy of our little Gregory will be positive. He will look down, and he will see his Mommy and Daddy fill this painful void with beautiful things. We will continue to be committed to our family, and to each other. We will continue to give. We will raise money for the “Children’s Gaucher Research Fund”. We will be involved in the research in the coming years. We will fill ourselves with all that defined little Gregory; determination, a sense of humor, a spirit of hope, and an appreciation for each day.
To Gregory We Say
You taught us “to be a child is to know the joy of living. To have a child is to know the beauty of life.” We will always remember your smile, your humor, and your determination. Most of all, we will remember your courage. Mommy and Daddy will not be resentful or bitter, and we will not turn our backs on God. There will always be an emptiness inside, but we will fill that emptiness with memories of you. We love you, and we will miss you, until we see you again.
To All of You We Say
God shows his goodness and love through you. Continue to open your hearts. Do not be afraid to look us in the eye. Do not be afraid to say Gregory’s name. Do not be afraid to give us a hug. And do not be embarrassed if we cry.
“Children’s Gaucher Research Fund”
We lost the battle to save little Gregory’s life, but we are not ready to accept defeat in battling Children’s Gaucher Disease. We have founded the “Children’s Gaucher Research Fund” whereby 100% of every dollar donated, goes to medical research. All administrative costs are donated, or paid for by the founders.
As you read this, there are parents somewhere learning that their child has been diagnosed with Children’s Gaucher disease. As you read this, there are parents caring for their chronically ill child. As you read this, there are parents mourning the loss of their son or daughter. We hope that you will adopt the “Children’s Gaucher Research Fund” as your charity of choice. It is our sincere desire that one day you will know that your contribution played a part in giving life, to thousands of young children.
“The Only Thing Incurable, Is Our Passion”
Gregory and Deborah Macres
Founders of the Children’s Gaucher Research Fund
Granite Bay, California