Written By Alicia Arce —
I am writing today to tell you a heart wrenching story that needs to be heard by others, in order to spread awareness. Let me start by explaining that my brother-in-law David is truly a wonderful person, someone I have looked up to and admired. He has always been an extremely hard worker, and is a loyal husband and devoted father of three beautiful children — Zoe, Kalista, and David Jr., ages 7, 5, and 2, respectively.
Currently both Zoe and Kalista attend Rivergold Elementary where each of them happily displays not only their intellect, but their athletic and artist abilities. Outside of school they enjoy horseback riding lessons and dance classes. Meanwhile David Jr. is still exploring the world at home and his favorite activity is playing with his monster truck collection.
I adore them each as their aunt; they deserve all the positivity this planet has to offer, for as joyful as they appear, they need support from others right now.
You see, it wasn’t that long ago their world began to change into a new one they don’t fully understand, a world that most people are not aware of.
It all began in February 2015, when their father, David, began to think he had carpel tunnel syndrome in his right hand — after all, you hear so many people talk about that issue. He didn’t seem to have any pain, rather, the hand began to stop functioning and he couldn’t use it. Due to working ten years straight at a law firm, it was safe to assume the problem was most likely from spending so many hours at his desk.
My sister, Amber, took David to a neurologist, thinking it would be a routine visit and that there would be a cure to fix his hand. The doctor began to explain that he did not think it was carpel tunnel syndrome, but more likely from an underlying disease. The doctor handed over a list, explaining that more testing was needed in order to find out which illness it could be — process of elimination.
That is when all the tests started, from MRIs to CT scans, to EKGS, all being done in San Francisco because they do not offer the types of tests he needed locally — even in Fresno. No doctor ever confirmed what David had until September 2015, when finally they told him the blunt truth. The diagnosis: amyotrophic lateral sclerosis (ALS) — also known as Lou Gehrig’s disease.
I was shocked when my sister told me what was going on; I was confused and saddened. I did not know how to help, other than saying “I am here,” for emotional support; she could talk to me or come to me if she ever felt over-burdened. However, I knew her world, as well as the children’s, had been altered forever.
You see, ALS isn’t curable — there is no way to stop it, and it isn’t something you inherit through genetics. This means, any single person in the world is capable of having Lou Gehrig’s disease regardless of age, gender, or race. Every 90 minutes someone is being diagnosed with ALS.
David was told he has an average of two to five years of his life left, because ALS is a progressive neurodegenerative disease. This means nerve cells and pathways within the brain and spinal cord are being attacked. As ALS continues, in the later stages of the disease, the individual’s body becomes paralyzed, although many patients’ minds can still function normally. It is important to note, however, that no two humans are the same, so the disease can cause a number of different symptoms from person to person. It is said that two out of 100,000 people will die from ALS.
I believe it is also crucial for me to mention that most individuals who are diagnosed with ALS are usually in their late 50s or 60s, but not always, as is the case with David. He is only 31 years old, and had planned a bright future with his wife and children. The two eldest children know their daddy is going to pass away and this has affected the family, not just mentally, but emotionally. It hurts to hear my sister tell me that for Christmas they wrote a letter to Santa to save their dad, or that they say “Why is daddy broken? Why can’t we fix him?”
David’s right hand — the one that originally bothered him in 2015 — is now balled into a constant clenched fist, and his right arm has become useless. He has fallen and tripped a few times. Eventually he will need a motorized wheelchair, feeding tubes, catheter, and other medical appliances. David needs help daily with things such as showering, shaving, eating, and changing his clothes. Right now, my sister is on a temporary 30-day leave so she can help her husband, as well as search for a caregiver. Amber is contracted with Fresno County as a therapist who works with child protective services. So, you can imagine that her career in itself, while it helps children in horrendous situations, it is very difficult one.
My sister, Amber, has never been one to ask for handouts, but understand it takes about $300,000.00 a year to care for a person with ALS. She works endlessly to keep the house running; the bills are paid, food on the table, and she is a superwoman in my eyes. That is why today I sat down and wrote this as best I could, because I know they need someone to write their story for them. I know they need support as well as any donations anyone is willing to offer. As long as my words reach just one other person, that would be enough.
Be aware for you and your loved ones, spread the word, and do what you can. Thank you.
Alicia Arce is David Tringali’s sister-in-law.
