My name is Rafael Castro and I’m married to Luzka.
We live in Lake Elsinore, CA in a home that is slowly transforming to meet the needs of our wonderful son.
His name is Matthew and he is 3 years old.
Matthew was born at 37 weeks and his birth was normal with no complications.
Unfortunately, when Matthew reached six weeks of age, he experienced a haemorrhage causing huge damage to the right side of his brain.
He was later diagnosed with cerebral palsy.
His doctor said he was going to be a vegetable and may die in the ICU.
The brain damage that occurred mainly affected Matthew’s motor skills.
He combat crawls, he laughs, he eats, he pushes himself on the pony, and he moves in his harness.
He is currently unable to crawl, walk or sit on his own.
Neither is he able to talk, but he has started to make noises we are learning to understand.
He also needs to eat blended items and slowly is being introduced solid food.
This all affects every day of Matthew’s life as his quality of life depends on us and teaching him day by day.
Overall it prevents Matthew from learning how to be independent in this world.
He has made huge improvements since he left the hospital we have not stopped stimulating him and showing him everything we can.
Every little accomplishment is a party for us.
When Matthew gave us his first smile, when he first made a noise, when he first pushed himself down the ramp we built – it’s like hitting the lotto or better.
I got Matthew the Upsee, GoTo seat and Scooot because they allow kids to see things that they would normally not be able to experience.
I love the GoTo seat, it has been great for bike rides and food shopping.
Also that we were able to take him to the supermarket and not be inside a stroller, but being able to see other kids sitting the same way as him.
Matthew doesn’t have enough trunk or head control for his Scooot yet but he’ll get there.
Nobody want to see their son struggle, nobody wants to see their son have difficulties, but that’s why we are here, to help and guide and protect.
The struggle I go through every day is knowing that Matthew can’t defend himself alone right now and I don’t know what will be of him when I die.
It’s a fear that I have every single day and every moment is spent thinking about what I need to do to know Matthew will be OK when I am not here.
It kills me inside, but I don’t show it, I don’t let anyone know that because I have to be strong for my boy.
He is my boy and I will be here for him to help him get up, to get dressed, to play, to eat, to shower, to….well everything we do in this world.
I know it’s going to be a long battle, but Matthew, my wife and I will win the war against the obstacles that CP places us in our path.
Would you like to be a Firefly Champion?