By Matthew Santamaria (firstname.lastname@example.org)
The year is 1985. Felicia Martinez is having a baby. She spent 6 of her 9 pregnancy months in the hospital. Now, she was struggling with a weeklong of labor. She and her husband Juan knew that this child would be different from the rest. Then, on December 5th, he came from the stars and into our lives. His name was Gabriel Anthony Martinez. He was the youngest of six children in the family.
Before the age of 17, Gabriel had a normal childhood and always had a smile on his face. His parents are pastors. He was a master at video games and loved playing sports. According to his sister Vanessa, he would practice his sweet basketball moves outside with his neighbors. He told his mom that one day he will go pro, buy her a limo, and take care of his family.
Gabriel was never mean to anyone growing up. He loved watching WWE. His favorite wrestlers growing up were Stone Cold Steve Austin and Goldberg. Gabriel would even use family home VHS tapes and record Monday Night Raw and Smackdown over them. Once his dad found out, he was mad. However, according to Vanessa, he never got in trouble for it and was always the “Good Son”.
Everything was going right in Gabriel’s life. Then, things took a turn for the worse. In November of 2007, at the age of 17, he was diagnosed with Juvenile Onset Huntington disease (JHD). It is a less common and early onset form of Huntington disease that begins in childhood or adolescence. Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. However, this was a shock to the family and they did not know anyone in their family with HD.
“Together as a family and our faith in God we knew we weren’t going to let this change how we viewed him or treated him,” said Vanessa. “Our faith in God was and is very instrumental in our lives and helped guide us and understand what was happening. We did not feel sorry for him because he didn’t; he is and was one of the strongest individuals I’ve ever known.”
From their knowledge, Gabriel’s parents did not have HD in their family. His parents were tested and her father had a low-high count on one allele. He will not develop the disease but has a 50% chance of passing it to an offspring. Once he found out, Gabriel was strong. During his HD stage, he only cried twice. The first time he cried was when he found out about the diagnosis. “The biggest struggle overall would be the fact this disorder is not well known especially in the medical field,” Vanessa explains. “There were professionals who had never seen someone with Huntington’s and were a bit distraught themselves when caring for him. His primary doctor, dentist, and even eye doctor would struggle and ask questions of his condition. Even at times when he would get sick and be taken to the hospital the Dr’s and nurses were unsure how to treat him, which would delay his treatments.”
Symptoms of JHD include changes in personality, coordination, behavior, speech or ability to learn. The physical changes include stiffness of the legs, clumsiness, slowness of movement, tremors. Compared to adult HD, seizures and rigidity are common, chorea is uncommon. JHD has a more rapid progression rate than adult onset HD. Death often occurs within 10 years of JHD onset.
However, Gabriel would not give up as Dr. Johan Samantha would see him on a consistent basis. “Dr. Samantha and his team were phenomenal, and they helped us all cope, providing and directing us on what we needed to do, where to go, and how to prepare,” said Vanessa.
He would also experience the world. He would travel oversees to Turkey and Israel. He would ride the roller coasters at Six Flags, spend time at the beach and feel the warmth of the sun. Gabriel was able to tour AT&T stadium, home of the Dallas Cowboys. He also attended games for the Arizona Cardinals, Phoenix Suns, and the Arizona Diamondbacks. Gabriel was experiencing life to the fullest.
“Gabriel didn’t just go through the motions of life; he lived each moment and made it count. He never once let his disease define him or stop him,” Vanessa explains. “Gabriel will always be remembered for his smile and his love. If anything, I know my brother would want all of us to be happy, and follow his footsteps of enjoying life, smiling, and most importantly loving and serving Jesus.”
Nothing would compare to the love he had for his family. He loved spending time with them. It didn’t matter if they went to the movies or if they were having a lazy day. The moments he had with his family were the ones he always wanted to remember. “He just loved being around us,” said Vanessa. “It was a must to say hi to him and when you didn’t he made sure he gave you the stink eye and would scold you until you acknowledged him and when you did say hi, oh how big his eyes and smile would get.”
However, Gabriel was still battling the disease. In order to slow down the progression of the disease, he would attend physical therapy. Then, he was unable to walk and was confined to a wheel chair. Gabriel was given different medications in order to help with irritability and body movements. He also had problems eating. Once Gabriel could no longer speak, things started to go downhill.
“My brother mentally was there but trying to communicate with loved ones especially my parents was difficult,” said Vanessa. “We had to do one finger for yes and two for no or raise your hand etc. At times when my brother was not understood, he would cry out of frustration and all my parents could do was cry right alongside of him. We did try to use several voice apps to help with the communication, but his movement was too uncontrollable, and he would just cry in frustration as he was unable to control his movements.”
In 2014, Gabriel was given a feeding tube. However, his mom would continue to sneak in desserts for him including his favorite, a strawberry shake. She wanted her son to live close to a normal life as he could. This included not sending her son to a home or on his final days to hospice. The family knew that the best place for Gabriel was with home alongside his family. His mother was his primary caregiver.
“My parents took my brother everywhere they could, and at times they could not they made sure he was never left unattended,” said Vanessa. “He had accessories to help him live and move around more comfortable from an adjustable bed, a tub seat, and a wheelchair. Even with the accessories for a better living accommodation, nights were still hard as he had trouble sleeping. My mother would sleep next to him to give him comfort and to calm him down. It was a struggle to find resources to help my brother as the disease is not known to many.”
In the last few months of his life, it finally hit the family that Gabriel was sick and there was nothing they could do. According to Vanessa, his ability to communicate and alertness was no longer there. He was now heavily medicated to control his movements and help him sleep. Gabriel was also in a state of “daydreaming”. His family used this term as he would look at you, not be there, and not respond as before.
“Caring for him become more difficult,” said Vanessa. “I believe the last few months were the toughest for all of us, but we all remained strong and our faith in God once again is what kept us going. We didn’t understand and still don’t understand why or how, but we do know now that my brother is in a better place.”
On January 10th, 2019, Gabriel Anthony Martinez passed away at the age of 33 in his sleep and was previously fighting a fever. “It was a very painful journey in our lives that we pray no one has to go through it,” said Gabriel’s mother.
Gabriel lived each and every moment of his life. He was stronger than anybody could have ever imagined. His smile brought light in the room. Gabriel was Superman, the nickname his family gave him. They also put two together to be better known as G-Man, powerful than anyone else in this world that is looking over his loved ones.
“I know my brother would want all of us to be happy, and follow his footsteps of enjoying life, smiling, and most importantly loving and serving Jesus,” Vanessa explains. “It won’t be the same without him, we won’t see him at my parents, or sitting at the back pew in church, can’t ask him about the latest movie or gossip, but we know he’s in a better place.”
Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.
The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.
This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at email@example.com