I am a wife, mother, sister, daughter, aunt, cousin and friend…
Many of my friends tell me they want to travel the world, run a marathon, or win the Lotto….
For me, it’s about helping others, whether emotionally, financially or physically; it’s about making a difference. I will turn 50 this year and I want to understand my mission here on earth, my purpose …
And along comes Mario Toranzo, is it a coincidence? Do I even believe in coincidences?…I really do not.
Mario is a 20 year old young man, with the brain capacity of a 10 year old. He is the son of Ileana Toranzo. I had the pleasure of being introduced to this wonderful mother and son by a friend of mine; Inez Romaguera; whom I had shared my desire to help single mothers with children that have life threatening illness.
Mario suffers from Leigh Syndrome, a severe neurological disorder that affects 1 in every 40,000 newborns. This condition is characterized by progressive loss of mental and movement abilities (psychomotor regression) which typically results in death within the first 10 years of life, usually by respiratory failure.
Mario has survived the odds. The reason for his survival and the reason why he is called the “Miracle Child”is because of the dedication and perseverance his mother has shown throughout her journey to save her son. The Signs and symptoms of Leigh Syndrome are caused in part by patches of damaged tissue (lesions) that develop in the brain. These areas are responsible for balance, coordination, movement, swallowing, breathing, hearing and seeing. These lesions also affect the ability to activate muscles used for relay sensory information back to the brain. Cell Death in the brain is the likely causes of the characteristic lesions seen in Leigh Syndrome.
When Mario was born, he was misdiagnosed several times when he was a baby. He was typically delayed in all aspects of child growth, from walking to standing to speaking. Shortly after learning of his condition, his father left them and Ileana has had to be both the Mother and Father in their home. Mario’s mother tried to provide the most normal environment for her son, but knew there was something definitely wrong. When Mario was of school age, his mother placed him in special classes within the public school system for those with learning challenges. When Mario turned 12 years old, he began to walk with a limp basically leaning towards one side for balance. Unfortunately, he became the victim of bullying. The bullying was constant, and the school communicated with Mario’s mom that it may be wise to put him in a private school with children with special needs. As a single Mom, it was a huge financial sacrifice but Ileana managed to send her son to Atlantis Academy in Miami and Mario graduated with a High School Diploma.
Unfortunately, in the last 2 years since achieving this milestone, Mario’s condition has worsened. Ileana, has put her life on hold completely to dedicate herself to taking care of her son, and she was unable to continue paying her mortgage as the limited income she now had was going to pay for her son’s needs. Mario is disabled however not all the medications he is required to take are covered by his insurance. Mario requires 24 hour around the clock care. His mother has not missed a day by her son’s side. Unfortunately Ileana had to stop paying her mortgage to provide the bare necessities such as food and medication for her son. It is sad to say that Mario and his mother Ileana may be faced with being homeless. Ileana has visited several shelters but they cannot accommodate children that require oxygen or all the other special equipment needed to provide for his basic needs.
There is no cure from this disease, and Mario will not get any better, his condition will worsen. Mario now has iron buildup in his brain.
I spoke to Mario and it was remarkable to see how well he communicated with me, telling me that his childhood dream has always been to one day visit New York City and see the Statue of Liberty. He also enjoys listening to Pitbull’s music. His mother shared with me that in his hospital bed at Jackson while he was in the Hospice unit while the doctors informed her that her son had days to live, she put on his favorite Pitbull song to make him feel comfortable and somehow Mario moved his hand and gave her the thumbs up!! At that point this mother knew her son was not going to die and against orders she took him home and has been caring for him ever since.
He even went home on a 24 hour Ventilator and thanks to her dedication, care and prayers, he is now only using Oxygen when he sleeps.
I am trying to grant him his final wish and visit NYC , Please if you or someone you know has resources or can help this family it would be greatly appreciated, please help in any way you can. My goal is to raise 10K in order to satisfy his wish to visit N.Y.
Mercy del Castillo
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