Richmond County Savings Foundation

If you were with us at “Jeans for Rare Genes” you heard me announce we had received a grant for $2500 from the Richmond County Savings Foundation.

This story Inspirational Staten Islander to host Fund Raiser ran on February 4th.  On February 8th I was contacted by the Richmond County Savings Foundation.  The story had been read, and it was suggested we apply for a grant on behalf of the PTEN Foundation.

We are relatively new to the fundraising thing, but with a lot of help, we got on track and completed the application.  The PTEN Foundation President, Kristen, spoke with them to get the 501c3 papers squared away.   And – about 10 days later we were notified of a $2500 grant, awarded to the PTEN Foundation!

We included the grant money in all our fundraising totals for the event, but today we got to go to the office to receive the check.  We got to meet Mr. Cesar Claro, who noticed Meghan’s story.  We got to meet Ms. DeSapio who helped us so much via phone and Email.

Meghan took the day off from school, because my speaking time is so limited, and because she’s the reason all this happens anyway.  It was just right for her to be there.

We gathered in a conference room with about 10 incredibly inspirational people.  I loved how professional, yet casual the whole experience was.  Amounts of grants were not discussed.  Checks were distributed in sealed envelopes, but first , everyone spoke about why they were there and how the grant was going to help.

Meghan spoke a little about Cowden’s Syndrome, and how we are hoping the PTEN Foundation will be able to inspire research on our disorder.  She did great, as usual.

We got to hear from a teacher, and his school’s work with Habitat for Humanity.  We heard from “Metropolitan Fire” and how the grant would help their organization.

We got to meet Dennis McKeon From Where To Turn, and hear about the work his organization does on Staten Island.

We heard about the Moravian Church garden and their donations of food.

We met E. Randolph Wheagar from 2nd Chance Youth Empowerment Program, and we were inspired by their community work as well.

We met Jennifer Dudley from Staten Island Children’s Museum and learned about their efforts to “spruce up” the museum.

We met a few other incredible folks as well, one whose organization was obtaining deeds to local neglected cemeteries so they could be maintained.  In the absence of pen and paper a few are slipping my mind, but it was a fantastic experience.  It was an intense 45 minutes!

Perhaps the one that touched our hearts most was Mr. Capolongo who spoke of his son Michael with Duchenne Muscular Dystrophy.  If you are not familiar with the genetic disorder, you can get some information here. Duchenne Muscular Dystrophy  It is a genetic disorder affecting about 1 in 3,500 boys.  The body lack dystrophin, and without it muscle cells become damaged and weaken.  It is progressive.  Michael is 11.  They have 2 other healthy children.  They are a family like ours.  Dad is a policeman, mom is a nurse and a breast cancer survivor. Yet, they have managed to create a not for profit, Michael’s Cause and have raised a million dollars to help fund research, and hopefully, ultimately a cure.

In the 30 minutes we sat across a table I felt inspired, and connected.  I respect so much the positive outlook, and the awareness that even in strife, others have it worse.  I respected the acknowledgement that every day is a gift, and life can change your perspective quickly.  These are things we identify with in this house.  Those are principles we live by.

Meghan and I often feel a little more “at home” in the presence of others with rare disease.  While they are all so drastically different, the difficulty, the fear, the unknown, the isolation, they all overlap.  And what also overlaps are your decisions in how to handle them.

I was reminded of my own girl, at the age of nine telling NY1 that. “You have a choice, you can get angry or you can DO something.”  And, “I feel like I was put here to DO something.”  Watch this clip and reminisce with me.

Today we were full of gratitude.  Today we were inspired by others.  Today we were reminded of our own mission.  Today was a continuation of an ongoing goal,  and a reminder that it matters.  It all matters.

We remain

#beatingcowdens

Inspiration

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Mother.  Father.  Daughter. Son. Spouse. Sister.  Brother.  Grandparent.  Aunt.  Uncle.  Niece. Nephew. Friend.

If we are lucky, we connect the word “Inspiration” with one or more of them in our lives.

It’s been a really long month. And on the surface we have been preparing for the Second  Annual “Jeans for Rare Genes” Fundraiser at the Hilton this Sunday, February 21st. ( TICKETS FOR THE FUNDRAISER – HERE )

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My husband has been wrapping baskets.  My daughter has been soliciting donations, and publicizing the event.  She was invited to speak at a Young Republicans Meeting, a Junior Giving Circle Meeting at IS75, and she was invited to speak to PS30 in Westerleigh.  Tonight she is thrilled to be speaking at the Staten Island Giving Circle Meeting.  Staten Island Giving Circle

I have been trying to stay on top of vendors, and seating, and tickets.  But I have been distracted.  We have all been distracted.

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Those two, in the center, my grandparents, are at the center of this family.  They are the inspiration.  It is their ripple effect that allows all of us to do what we can to make the world better.  They are married 70 years.  She is 95.  He is 96.  And until just over a month ago he lovingly cared for her with the limited assistance of my mom and a 4 hour a day aide.  He cooked, cleaned, shopped, did the laundry, paid the bills.  And endured a great deal, out of love.  Pure love.

My grandfather spent 4 years in service to our country during World War II.  He married my Grandma a few weeks after returning in December of 1945.  He became a member of the FDNY for 23 years.  They raised two children.  They acted as second parents for many years to my older sister and myself.  We watched Pop, a man of faith, not talk the talk, but also ‘walk the walk.’

I learned the meaning of inspiration through his humble humility.  I learned love by watching him kiss Grandma every time he left the house.  I learned generosity by watching him give of himself, unceasing, to neighbors, friends, and especially family.  He inspires my life, and daily inspires me to be a better person.

His health is failing.  In one month the transformation is utterly disturbing.  And yet, he managed the strength to mouth the words to “Jesus Loves Me” and the Lord’s Prayer on Sunday as my brother-in-law gave us communion.  I’ve been distracted by one of my inspirations.

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His stubbornness, one of his best, and most challenging qualities, is one I passed on to my daughter.

Most of you know her story well.  For those who don’t I’ll give you the shortest version I can.

She was born in distress, spent 4 days as the biggest, fiestiest baby in the NICU before heading home.  There was a year or more of colicky sleepless nights, which melded together with hospital visits, the first of many surgeries to come, developmental delays, early intervention, and so on.  By the time she was three I had CPSE telling me she’d never sit in a normal PreK or a regular school.  We read, and researched, and peeled away layers in ways that were sometimes conventional and sometimes alternative.  We found a combination of strategies that left my girl in an honors program early in her academic career.

The surgeries kept coming.  The doctors appointments were relentless.  The Physical Therapist Dr. Jill who loved her so much, pushed me to genetic testing.  There the diagnosis of PTEN mutation, or Cowden’s Syndrome changed things forever.

Now there was a name.  Now there was a reason.  But now there was so much more to be worried about.  Now people scurried and scampered about and whispered and doctors “googled” while we were in the room.  Now her diagnosis prompted MY diagnosis, as Cowden’s is inherited.  And so much of my own medical history made sense.

Four years ago I was pushed to undergo a bilateral mastectomy.  It was supposed to be prophylactic based on the insane breast cancer risks for Cowden’s Syndrome patients.  And then on pathology there was the breast cancer diagnosis, and the realization that my daughter saved my life.  Humbled.

life what happens and how you react

The surgeries persist.  And get more complicated as the years go on.  Life gets more complicated when you are 12 and in Junior High.  Kids don’t really get this life.  And well, they shouldn’t.  But it gets lonely.

Sometimes she gets angry.  Mostly she tolerates the loneliness.  Mostly she channels her energy.  She dreams of cures.  She knows cures take money.  So she spearheads fundraisers.  She talks even when no one listens.  She is grateful for her Cowden’s in the midst of the rare diseases we have seen.

She gave up soccer, and running, and dance.  She hurts after normal kid play.  She gets frustrated.  Then she swims.  Not to be put off, she found the place she can compete.  And she pushes herself to be better every day.

She does well in school.  Although it’s not always politically correct to talk about it.  I’m her Mom, so I can say it.

She gets up every day.  She smiles.  She reaches.  She inspires.  Me, and countless others.  I am one of the lucky ones who has been inspired by many – right in my own family.

apirations-dreams-scare-you

 

So, a few weeks ago when the local paper asked for an inspirational Staten Islander, she was my natural choice.  And I wrote, honestly, and without a second thought.

When the paper came out asking for us to vote I read every bio.  And I was inspired.  By all of them.  Then Meghan read them.  She was so touched I had written about her, she told me she’s be proud to lose to any of them.

There was a Facebook post this morning by the daughter of another nominee.  Her Dad sounds like a stellar man.  He offered to do anything for Meghan.  He is kind and generous of heart.  The daughter is lucky, as I am lucky.  We have inspiration right in our own families.

Maybe we can all meet at the fundraiser Sunday!

TICKETS FOR SUNDAY 2/21 HERE!

You can read all about all of them and vote below.

Somehow, I think they’ve all won.

READ AND VOTE FOR INSPIRATIONAL STATEN ISLANDER!