Hello, my name is Everett Hunter Rubin Hill

I am the son of Jenna and Josh.
I am the grandson of Alison and Jim.
I am the great-grandson of Roberta and Fr. Paul

I was born on Sunday, January 13, 2019, in Ocala, Florida. What should have been smiles on everyone’s face soon turned to sadness, worry and fear. I was born with the umbilical cord wrapped twice around my neck, blue and limp. My mommy was not so fine either (too much bleeding). I was put immediately on a ventilator and wrapped in a cold pack. The cold pack was to bring down the body temperature and hopefully stop any further or no brain damage.

Two hours later I was brought to my mommy, Jenna, daddy, Josh and grandma, Alison for a quick hug and kiss to then be flown in a helicopter to Shands Children’s Hospital at the University of Florida in Gainesville. I was taken to NICU to be watched constantly for the next 36 hours. Lots of machines, IVs and testing was put into place upon my arrival.

My Dad, Josh, says I’m a “Rock Star” because of all the girls around me (Nurses) and flying in a helicopter! I think I would have rather been in my mother’s arms.

My mother’s problems were taken care of and that brave woman was on her way to me within 18 hours of my birth. The only place to sit in the NICU was a hard office chair on wheels, but there she was every day watching over me.

My dad and my mom as well as the whole family have a lot of faith. Prayers to Our Lord, Jesus, were sent out from many family, friends and strangers without hesitation. These are comforting to me and my family. Many miracles have happened in this world - Everyone is praying that I am one too.

Three days after my birth the cold pack was removed and an MRI was done. NO BRAIN DAMAGE. YEAH! However, it was noticed that I wasn’t moving like most babies. My hands were limp and I didn’t seem to move
my arms and legs like normal. Blood tests were drawn and sent to a special lab for genetic testing.

Have seeing many doctors of all kinds. It was determined that I had a genetic disorder called SMA. This was not good! No cure and fatal at an early age. My mom and dad were given a large packet of information to read. My mommy was very upset and sad. Within a few days some of the genetic testing came back and HALLELUAH! NO SMA.

SO, what is wrong??? More genetic testing. A sample was taken from my left leg and heel of my left foot.

In the meantime, my left foot is severely turned in so I will wear a soft cast for a while. My wrists are still limp so I will have exercises to do and a removable brace on each one. They operated on me and I now have a tracheotomy and a stomach button for feeding.

The testing came back. I have MTM - Myotubular Myopathy. A genetic disorder that weakens the skeletal muscles. Many questions as to my future development will go unanswered until I grow some more.

More than anything my family wants for me to be able to come home. This is going to take some work on everybody’s part.

First, I need to gain weight. I cannot go home on a ventilator until I weigh 11 pounds - 4 more to go! The doctors are trying a new formula - more fat!

My house has to be equipped with some special equipment before my arrival. Rewired electric to my room, plumbing to my room, a back-up generator, video monitoring system, updated overhead lighting, a nurse’s work station, a sink (things around me must be very, very clean - especially hands, new paint, new blinds. I already have my crib and a rocking chair. Two very important items.

My mommy needs a car - a wheelchair accessible van so that I can get to my doctor appointments. We live 40 miles from Gainesville where my special doctors are.
The house that my parents lease was built in the 70’s with original kitchen appliances. We need a refrigerator, stove top and wall oven.

I will need a stroller that can accommodate my portable oxygen machine and eventually a wheel chair.

My dad, an auto mechanic, works very hard to provide for our family. He not only has me but two sons, 8 and 4 and a daughter, 6 years old.

My mommy was almost finished her teaching degree but now she has me - a FULL time job. I would love for her to complete her degree for her future and self-esteem.

I cannot be left alone while on the ventilator so we will have a nurse in our home during the overnight hours.

As you can see, taking care of me will not be easy. Please reach in your heart and pocket to help my mommy and daddy with this daunting task.