Anthony’s Story

My son, Anthony, was about 8 months old when he started showing weakness and no strength in the core of his neck or back. Sitting up was a huge task and he didn’t portray normal activities that toddlers accomplish through the stepping stones of life. I always wondered why Anthony never asked for my help or why he never really cried. He was the son any mom would wish for and that anyone would say “parenting is so easy!” He was so good, with a  passive behavior and so alert with a smile that would light up the room. As an educator, I knew in my heart something was wrong when he never crawled, when he played in his own world and when he would just point at objects that he wanted. I used my intuition and had  him tested but after two denials of services, I didn’t give up. I couldn’t pinpoint what was happening, but at 18 months he was diagnosed with autism and was granted  ABA, Speech, Physical Therapy and Occupational Therapy to help him with all his needs. As he grew he became stronger and more articulate, but  I still felt there was a disconnect.  Anthony tip toed when he walked or ran, he couldn’t  lift himself up without help or  grabbing on to things and he was unable to walk up and down the stairs without holding on to the railing or crawling up and down.  As he ate, he had to be fed because  he was unable to hold a fork or spoon to feed himself. In addition, he was unable to drink from a cup without choking and was never able to drink without a straw.  Anthony’s  body had no definition on his arms, legs and face. He stayed so young looking with no maturity to his face or tone to his body and still no strength. He didn’t gain weight or grow like other children his age. With so many signs and no answers I was always searching for answers but I knew there was a missing link.

Then the day came when the pieces of the puzzle started to form. The perfect day on  April 23,2016 became a nightmare! All day, my son was playing and full of life riding his bike and playing outside. That night my son started to look as if he was having a bad spasm and suddenly his whole body was jerking  and his head went back gulping for air and turning completely blue. All I thought about was why is this happening to my baby? As he was gasping for a breathe,  all I could do was turn him to his side and wonder what was happening??  Through the screaming of fear, I watched  his eyes rolling back and all I could do was pray that my son would breathe and that he wasn’t losing oxygen to his brain. The fear I felt in  3.5 minutes felt like an eternity. When the jerking of his body finally stopped and his body began to relax, all I can see was a blank “deer like” stare and he was non-responsive. All I can say through my tears was “Anthony can you hear me?” but all he did was look through me.  As he came out of the frozen stare and began to cry, I held my baby so tight , rocked him and told him “it was going to be OK”. Unfortunately, the seizures continued and my nightmare was progressively getting worse.  As the EMS arrived, he continued to have another seizure. The cluster of seizures occurred every 15-20 minutes. While traveling in the ambulance, he was crying saying “I want to go home”; I’m tired,” but as we approached the emergency room my son was so weak and non- responsive. As we met with a team of doctors, they reassured us that the medicine being administered would calm his brain from seizing. After a battery of tests  which monitored his brain for three days, he would now be medicated on seizure medicine (Keppra) for life. The seizures continued a week later with the same pattern and my son was turning blue and his chest was contracting with no air . The minutes passed watching  and hoping they would end. There was no communication with a trance like stare as we waited for help. This continued for months until we got answers as to why the seizures were taking place.  Also in searching for why Anthony was so weak, genetic testing was ordered to help us understand why my son was deteriorating.

Anthony, my lovable 5 -year-old, was diagnosed with a RARE INCURABLE genetic disorder called MELAS which is a form of Mitochondrial Disease.  Anthony wants to be a typical boy his age but he has always had struggles through the years with language, muscle tone and his lack of energy.  Always searching for answers, I knew there was a missing link. This rare metabolic disease is robbing Anthony of the energy his body needs to function. The Powerhouse of Anthony’s daily life has been affected. Simple everyday tasks such as playing, eating, digesting, walking, running , drawing or even writing are difficult activities for him.
Anthony’s daily life has been compromised in so many ways. He is a weak boy who struggles with everyday routines. His coordination is lacking which leads him to have no balance therefore he is unable to jump, run and go up and down the stairs. His energy level is depleted quickly during ANY daily activity such as eating, playing and  exercising which forces him to sleep. A prolonged rest period allows for his energy to refuel and for cell recovery. The importance of drinking and maintaining a certain amount of calories per day is a necessity so that his body does not become stressed causing seizures.
Anthony was hospitalized due to uncontrollable seizures and weakness due to this horrible disease. Due to his lack of daily calorie intake, Anthony  had surgery to get a GI FEEDING TUBE. The tube will give him all the nutrients he needs to maintain his daily nutritional value. Anthony’s physiological stress on his body causes him not to be able to regulate his own body temperature.  He does not sweat, however when he feels hot he seems to “wilt” and needs to be placed in a cooler environment and drink constantly to regain his energy levels.
This disease kills more children every year than ALL childhood cancers combined. This incurable disease has NO current or proven treatment for a cure. Although there is no medicine for this disease, specialists have placed him on a non-insured research based vitamin cocktail and Arginine that costs $700.00 a month. In addition, the cost for the feeding tube supplies will be $450.00 a month. This is a financial burden on Anthony’s family. Due to a minimal amount of doctors who specialize in this disease, the insurance companies DO NOT cover MOST medical expenses or research based medications. Therefore, all expenses are out of pocket and we need your HELP for a very special boy who has touched the lives of his family and friends in so many ways. Please help us give Anthony the ability to slow down his disease and the freedom to make wonderful childhood memories.

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