Song Writing Club Works to Raise Funds for East Leyden Alum

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Lucia Ramirez, a 2011 graduate, was a member of Songwriting Club at East Leyden High School her freshman and sophomore year. During her junior year, she was diagnosed with a rare and chronic illness.

This year Songwriting Club took her poem, inspirations, and made them into a song and video.

The video which can be found here is monetized with ads and the more traffic the video receives, the more money Ramirez will receive for both impression views and ad clicks.

Any and all the traffic you can send her way helps. The account linked to the video is in her name and the money goes directly to her forever.

In Her Own Words –

It has changed my life because I struggle to eat, I use a feeding tube, I haven’t been able to go to college because I have been so sick and weak. I have had to go through 2 comas. My first coma lasted 8 days and during the second one, I was in a vegetative state for 24 hours. If they couldn’t wake me up in 24 hours they weren’t going to be able to wake me up at all. I had a Portacath placement, Portacath removal, picc line placement picc line removal. Gastro- jejunal feeding tube placement, full Nissan fundoplocation surgery (This made an artificial valve in my stomach to decrease the reflux and vomitting. I have had several hospitalizations, infections, trials and tribulations. It has affected my heart, intestine, stomach, balance, blood pressure, weakness with many more symptoms that are hard to write down.

When life goes through an area
where it seems to hail and storm,
whenever my health declines
and things begin to get worse
I keep my faith in God
and I don’t give up.

I keep a positive outlook and trust in God and I write poems. I have learned to take life one day, one hour at a time. I try to not worry about the past or the future. I live in the present and I live each day as if it were my last. I am ready to live and I’m ready to die. I don’t ever quit, and I know God is by my side through all these hardships. I want to help others who are going through hardships, trials, and tribulations. I want to be able to give them a breath of hope and life. I also want them to know that God never abandons you, even though your trials and struggles may make you feel that way.

For information on Ramirez’s illness, please see below:

Sandifer syndrome (or Sandifer’ssyndrome) is apaediatric medical disorder, characterised bygastrointestinal symptoms and associatedneurological featuresThere is a significant correlation between the syndrome andgastroesophageal reflux disease (GERD), however it is estimated to occur in less than 1% of children with reflux.

Olivopontocerebellar atrophy (OPCA) is the degeneration of neurons in specific areas of the brain – the cerebellum, pons, and inferior olives. It affects your organs, multiple system and organs.

Multiple-system atrophy (MSA) is adegenerativeneurological disorder. MSA is associated with the degeneration of nerve cells in specific areas of the brain. This cell degeneration causes problems with movement, balance, and other autonomic functions of the body such blood-pressure regulation.

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