STATEN ISLAND, N.Y. -- Anthony Capece is fighting for his life. The 5-year-old New Dorp boy, son of Anthony and Danielle Capece, has been diagnosed with the mitochondrial disease, MELAS.

MELAS -- an abbreviation for Mitochondrial Encephalopathy, Lactic acidosis, and Stroke-like episodes -- is a rare genetic disorder which results in stroke and dementia, and can affect people at very different times in life, ranging from age 4 to age 40 or more.

However, most patients with MELAS syndrome show symptoms before they are 20 years old.

Anthony's young life has been compromised in so many ways, especially struggling with chronic weakness and everyday routines. His coordination is lacking which leads to difficulty in balance and coordination; therefore, he is unable to jump, run and go up and down the stairs.



In addition, Anthony's energy level is depleted quickly during daily activity that young children his age often take for granted, like eating, playing and exercising. He also requires plenty of sleep since prolonged rest period allows for his energy to refuel.



"My godson means the world to me and it breaks my heart everyday to watch him suffer with this horrific and disease," said his "honorary aunt," Jodi Macaluso of Princes Bay. "He has currently been hospitalized for 13 days and it's heart wrenching to watch him sit in that hospital bed weak and crying, 'I want to go home.'"

Battling MELAS requires drinking and maintaining a certain amount of calories per day for Anthony; it's also important that his body does not become stressed, which causes seizures.

Anthony is currently hospitalized due to uncontrollable seizures as well as having surgery for the GI feeding tube.

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 a month. In addition, the cost for the feeding tube supplies will be $450 a month. None of these expenses are covered by insurance.



If you'd like to help Anthony's parents with their medical expenses for their son, please visit: GoFundMe.com/anthony-smedicalexpenses.

ANTHONY'S MEDICAL JOURNEY

He started showing signs of malaise and no strength in the core of his neck or back when he was just 8 months old.. Sitting up was a huge task and he didn't partake in normal activities that toddlers accomplish through the stepping stones of life.



For example, 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.

When he ate, Anthony 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, his family started searching for answers and uncover a missing link. "I wish I could take my son's disease away but I cannot. Watching him suffer in the hospital for the last 13 days is the worst ordeal anyone can imagine," said his dad, Anthony.

"No child should spend their time in and out of emergency rooms and hospital beds. We are so grateful for every day, every moment we spend with our precious son."



According to Jodi, Anthony's mom Danielle knew in her heart something was wrong early on. Anthony never crawled and he played in his own world. He would just point at objects that he wanted.

Danielle used used her intuition as an educator and had him tested. 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.

Then came April 23, 2016. Throughout the day, Anthony was playing outside, full of life and riding his bike. That night, he started to look as if he was having a bad spasm and suddenly his whole body was jerking.

His head went back gulping for air and turning completely blue. Anthony started gasping for breath and his eyes started rolling back. When the jerking of his body finally stopped and his body began to relax, all his mom Danielle could see was blank, deer like stare. He was non-responsive.

After a battery of tests which monitored his brain for three days, genetic testing was ordered to help them understand why Anthony was deteriorating. MELAS was the culprit, robbing Anthony of the energy his body needs.



MORE ABOUT MELAS



MELAS syndrome is caused by mutations in the genetic material (DNA) in the mitochondria. While most of our DNA is in the chromosomes in the cell nucleus, some of our DNA is in another important structure called the mitochondrion (plural: mitochondria).



The mitochondria are located outside the nucleus in the cell's cytoplasm. Each mitochondrion has a chromosome made of DNA that is quite different from the better known chromosomes in the nucleus.

The mitochondrial chromosome is much smaller; it is round (whereas the chromosomes in the nucleus are normally shaped like rods); there are many copies of the mitochondrial chromosome in every cell; and no matter whether we are male or female, we inherit all of our mitochondrial chromosome from our mother.



Much of the DNA in our mitochondria is used to manufacture proteins involved in the key function of mitochondria -- to produce energy and power the cells in our body.