Simon Martinez

Welcome to Simon’s page! We are thankful for you and blessed to have you here! We are raising money through the nonprofit Help Hope Live to fund a WAV (wheelchair accessible van). We have chosen to fundraise with Help Hope Live in part because donations are tax deductible for contributors and donations will only be used to cover the WAV and any other medical and related expenses. If you would like to know more about Simon, we invite you to read on about his fun, interesting, yet challenging life.

Simon was born in 2004 with a metabolic genetic disorder known as Glutaric Acidemia Type 1, but we were not aware of it until he was six months old when he suffered a neurologic crisis (cerebral palsy). Since then Simon has had all his nutrition by way of a feeding tube, is non verbal and unable to walk or even sit up by himself. He requires 24 hour round the clock care which his mom and dad provide. Despite all this, Simon is extremely intelligent, aware of his surroundings, is very social and is a healthy, stable, joyful, and happy young man. He uses an eye gazing computer (Tobii Dynavox), which he controls with his eyes, for minimal communication and mostly for playing games or instruments or telling jokes!

Simon loves to be out and about and also loves to travel. Simon loves his weekly outings to Dadeland Mall, The Falls, church (not his favorite but he goes anyways), the movies, the grocery store, or just walks around the neighborhood. His favorite store is Macy’s – he is fascinated with all the shiny floors, lights, displays, elevators and the sales people who know him personally. He especially likes the lovely sales lady in the jewelry department. We have to be careful what time of day we visit though, because if it is almost closing time he gets upset when they start announcing that they are about to close! He also enjoys going to Biscayne National Park, Black Point Marina, Everglades National Park, visiting family and friends and anything else that will get him out of the house where it is beyond boring. Simon is extremely opinionated and likes to make his voice heard all. day. long. He has opinions about what we watch on tv, where we go or don’t go, what we talk about and what persons he likes or doesn’t like. He generally likes everyone with the exception of the amazing woman who cuts his hair and all his doctors – he’d rather not spend any time with them at all.

We have taken him on many long cross country road trips. Every summer we travel from Miami to Ohio to a family summer camp/retreat center called Catholic Familyland. He has been going there since he was two years old and absolutely loves it! He has been to 35 of the states of America from New York to Colorado to California and everything in between and even Hawaii where his aunt lives. He has also traveled internationally to Canada and El Salvador. Most of the travel now is limited to traveling by car since it is hard to get him on and off airplanes due to his size, mobility limitations and very tight quarters on airplanes.

With Simon now being almost 21 years old and getting bigger and heavier, we are at a point where we inevitably have to transition to a WAV (wheelchair accessible van). If you feel inclined to donate to Simon’s WAV fundraiser, we would be extremely grateful. Likewise, if you feel inclined to share his story and page we would be extremely grateful for that as well. May God bless your generosity! We invite you to please take a look at Simon’s pictures over the years.

Simon has been nothing but a blessing to us since the day he was born and he’s the absolute best son, brother, grandson, nephew, cousin, friend, and companion and we tell him that every day!