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 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.
I’m not one for New Year’s Resolutions. I don’t believe in waiting for a specific day to make changes. If they are needed, wanted, or warranted – we make them. Right then. Otherwise, I’m all about just being your best you- every day.
Parenting a teenager is tough stuff. Even when your teen is just a good soul, a hard -worker, a good student, and a compassionate human.
There are people who would challenge me that we have it easy. They give me the default model, that raising one child has to be easier than raising 2 or 3 or 4 or 5 or more… And maybe they are right. I will never know. But, they won’t either. That’s the point.
Raising our children, or living our lives is not meant to be a discussion of “harder” or “easier.” There are challenges present in every single scenario that comes to mind when I think of EVERY family I know. In this house we talk a lot. My girl and I, we talk about those other lives we know, and their battles. And we send love and prayers and warm wishes, as they do for us. It’s not a contest, it’s real life.
2016 saw the results of two uterine biopsies of my then 12 and 13 year old, with results that left us uneasy, and in a perpetual state of “cautious waiting.” It also saw me back in surgery, replacing less than 5 year old silicone implants because one had “fallen” And then, it saw my clumsiness as I spent 6 weeks booted with a broken toe.
2016 saw loss in my family, as we mourn Pop, and are readjusting with Grandma in her new living space.
Yet, we made it. We came out with a few bumps and bruises, but we made it.
2016 ended with 8th graders we know taking High School entrance and Scholarship Exams. The next weeks will bring jubilation, laughter, and tears.
Yet, we WILL make it- all of us.
The “To Do” list on the yellow pad to my right is busy. The fundraiser is about a month away and there is lots to be done.
There is also an MRI, a vascular surgeon, an orthopedist, an endocrinologist, and a gastroenterologist for Meghan, as well as Pre-surgical testing, a tentative surgery date, and a breast surgeon follow-up, an oncologist, and an endocrinologist for me. All before February 22. That’s IF no one requires additional testing for anything…
We will fit in the “regular” stuff too, like swimming, and meets, and school projects, and drama… well you know what I mean.
We are working hard to fit Cowden’s Syndrome into our lives, and not to let it RUN our lives. It’s a subtle difference on paper, but a HUGE one in practice.
And when the thought of running a house that contains TWO people with a rare genetic disorder becomes overwhelming – we try to step back and count our blessings. Because at the end of all days, regardless of our struggles, it is good for us, and those around us, if we can remain positive. I’m not saying we’re perfect at it – far from it actually, but it is a goal, and an on-going work in progress.
It came up this week when we were preparing for the fundraiser and talking about social media. Actually, it has come up a bunch of times since the iPhone became attached to her hand almost 3 years ago…
Digital footprint – how are you presented on the internet? What if someone “googled’ your name? Now? 5 years from now? 8 years from now before your job interview? The whole concept of this blog has been discussed in depth. Meghan, whether she likes it or not, at the age of 13 has an identity that is connected to her rare disease. Now, don’t misunderstand me for a minute – a close read would CLEARLY indicate, she is NOT her disease, but she will never have the opportunity to deny the diagnosis. That’s forever, and its important.
What she does with it, well that’s ongoing. She’s made some pretty dynamic choices to date. Sometimes she feels a bit like she has something to prove- so she does.
She’s been asking me for “snapchat” lately, and eventually I’ll give in. But, I’m one of the mean moms who makes her wait. Instagram is plenty to manage for now.
This week Meghan was nominated as “Inspirational Staten Islander of 2016.”
It prompted me to “google” my daughter. So when I type in her name connected to our home town, these are the first links to surface…
And just for good measure, I switched to an image search. These 5 were on the first page…
And, just to be sure, I even tried Youtube.com, only to find a video made in February 2016
Apparently she has listened, carefully. I don’t know what the future holds for my bright eyed activist. I know she’ll continue to take heat from a few along the way. I also know she’ll find the strength to rise above and press on. Because, that is what we do.
Would she like it is she were named “Inspirational Staten Islander of 2016”? Sure. Will it break her spirit one way or another, absolutely not. Her focus is, “If I win, we could get publicity to help raise money at the fundraiser…”
If you’ve read this far I’ll tell you what I know about the poll I’ve linked you to below. The voting takes place like a reality TV show. I’m not sure how valid it all is, but there is a week of lots of voting. It ends January 11th at noon. Apparently you can vote many times before it stops you. And then you can vote every hour. So pretty much, if it crosses your mind, and you find Meghan inspirational, save the link and vote whenever it crosses your mind, until your device tells you to stop.
Regardless of the outcome, life will go on. And we will continue on the same missions we’re on right now.
When I started this blog just about two and a half years ago, it was to serve as therapy for me. It took a while before I even started linking my posts to facebook. I didn’t pay much attention to the stats of the blog, except to occasionally marvel at the random countries my blog was being read.
This week while searching the year that was, I happened to notice that this little blog has cleared over 100,000 views!
Stunned. Amazed. Humbled. Grateful.
I think of the people who have reached out to me through this blog. People looking for an ear, or a point in the right direction. I think about the newly diagnosed who have come my way a few times, and have been relieved to learn everything can be ok with Cowden’s Syndrome.
I think of the blogs I follow, of people with and without Cowden’s, and all I have learned. Most especially that WE are not alone.
I think that spirit of companionship, whether it comes from a country across the world, or a city nearby is a factor in what motivates me to keep writing.
But, mostly blogging is my therapy. My free therapist. The computer is my listener. Where I can air my thoughts and ideas, and worries and hopes and dreams. And then I can edit myself into the positive mindset necessary to press on. This blog keeps me away from the negativity and the despair that can sometimes accompany this life.
And yesterday as I recapped “The year that everything broke…” I was reminded of all the blessings that came our way in 2014. And despite the lows, there always seemed to be someone, somewhere, with some random act of kindness, who was able to help us turn things around. For all of these people – and they know who they are – accept my gratitude, OUR gratitude. For really this is our story.
Although I am not much a fan of “New Year’s Resolutions,” or proclaiming that things will be drastically different in the minute it takes to pass from 11:59 PM on December 31st to January 1 at 12:00 AM… I wanted to highlight some of the positive things that have gone on for us in 2014.
We began last year, much as we will begin this year, preparing for Rare Disease Day. In February there was an assembly at my school. We gave out ribbons to all the students. Meghan and another family, two dear boys who had been affected by a different rare disease spoke. They opened some eyes that day.
And in the midst of that assembly Meghan met Borough President Oddo. The two struck up conversation like old friends. Meghan immediately respected and admired him, and he has become a mentor of sorts. They are in Email contact, she has been to Borough Hall to visit a few times. He was really the impetus behind Meghan believing there is no limit to the difference she can make in the world. He continues to encourage her as she plans Beating Cowden’s First “Jeans for Rare Genes” fundraiser on February 15, 2015. I feel so fortunate for her to see such a positive role model who changes the lives of so many just by being himself.
We had a fundraiser last year as well, and raised several thousand dollars which was donated to The Global Genes Project. Satisfaction. “For the babies who really need it, Mom.”
In February also in the midst of what was almost a train wreck around a bad snowstorm and a carefully orchestrated thyroidectomy, I frantically called in desperation to get us into NYC the night before the surgery. Ultimately we ended up with the greatest gift, as we were privileged to spend a few hours at Ronald McDonald House in NYC. The facility, the employees, the organization – all phenomenal. Our Guardian Angels were active that day!
Meghan received some awards this year that made us very proud. In the Spring she was selected as “Staten Islander of the Week.” At graduation, she received the “Portrait of Courage” award. In the summer she received a nomination from the Global Genes Project for their “Teen Advocacy Award.” On my birthday she received a “Kid of Achievement” award from the Staten Island Children’s Museum. She was starting to get the idea that SHE can make a difference.
In July the Borough President’s office arranged for Meghan to throw out the first pitch at a Staten Island Yankee game. And this girl who had never thrown a ball before received a crash course from some great friends. Not only was the pitch a success, but the number of friends and relatives who joined us at the game, wearing “I love someone with Cowden’s Syndrome” T-shirts, was beyond touching. We are loved.
August saw the overcoming of a lifelong fear of roller coasters, for both of us.
And in the fall we saw the first glimmer of hope that Meghan’s dream for a denim ribbon necklace was steps from being realized. Exciting times all around.
We capped the year off at the Stone House at Clove Lakes, with another family with a different rare disease, lighting their Christmas Tree to help raise awareness of rare and genetic diseases. Meghan’s intermediate school chorus came out on that chilly night to support the cause.
So Cowden’s Syndrome, while it creates more than it’s fair share of heartache and obstacles, also creates opportunity when we look for it.
Just like we notch off and remember each surgery, and the milestone of overcoming the recovery, we also acknowledge, enjoy, and savor the positive milestones.
We remember that “everyone has something.” We are grateful for the blessings in our lives. No one’s life is perfect, and far too often we all suffer from the belief that someone else’s “grass is greener.”
May each day hold for you enough positives to counteract the negatives, and the ability to look for the good in all situations, people and places.
That is my wish for my family and friends near and far, not just for the new year – but for every day of your lives.
Today I turned 41. And while I am incredibly grateful for the gift of life, and for “More Birthdays,” as the American Cancer Society once put it, my birthday holds all sorts of emotional challenges for me.
I have a memory for dates. And seasons. And events. And people. Especially people I love a lot. And 23 years ago on this November day, my beautiful 6 year old cousin Meghan was invited to dance with the angels. Childhood Leukemia weakened her body so, that she was not to stay here physically. Yet on my 18th birthday I got the gift of the most spectacular guardian angel – and her name and her spirit live on in my girl. Even with all the good, the day messes with me. I tried explaining it to my Meghan last night, and the best I could give her was – 23 years become 23 days sometimes. The pain just gets a whole lot more fresh.
And Grandma, Dad’s Mom got her wings just a few weeks ago. After 88 years and a life well-lived, it was still tough to see her go. Not even a year since Dad…
And last November 12th, on my 40th, my Dad was in the middle of what was to be the fight of his life. We spent it together. An unsavory appointment, and some legal crap I wish never had to be.
And this year a dear, compassionate, kind-hearted, fun-loving relative sits, so close to the end of his life here on earth. My heart just gets full.
So, it came as a pleasant surprise last week when my cell phone rang and it was Gina from the Staten Island Children’s Museum, telling me that Meghan had been selected as one of this year’s “Kid of Achievement” honorees, for her advocacy work in the community. The luncheon was to be held on November 12th.
“Of course we’ll be there.” And I couldn’t wait to share the news with her.
We kept kind of quiet while she prepared her speech, and I sent her to school this morning with her backpack and her speech and a pretty dress. Quite a swap from her typical sweats.
We arrived at the Hilton Garden at 11:15, sized up the room that we will be in for our fundraiser on February 15, 2015, and checked out the raffles. We met the other honoree, a lovely young woman being honored for her work with Project Homefront. The tables filled in and the event began.
When Meghan was introduced for this award, her advocacy was the focus. Her nominee(s) knew her history. They knew of her work, and her goals.
She delivered this speech with incredible poise.
When my mom got the call that I received this award, I was thrilled. All of my advocacy began with me wanting to make a difference. I am so honored, and humbled to realize that I am.
I was diagnosed in 2011 with a rare genetic disorder called Cowden’s Syndrome. It affects 1 in 200,000 people and it starts from a broken PTEN gene. The PTEN gene is the tumor suppressor. The PTEN gene prevents benign and cancerous tumors, but since mine is broken I have a higher chance of getting these things.
My Mom was diagnosed weeks after me. A few months after that she was diagnosed with early stage breast cancer. She had some pink ribbons around the house, and she got a pink ribbon Pandora necklace.
I knew about the gold ribbon for childhood cancer, and the puzzle piece for autism. I knew there were many others, and that all these disorders had a symbol, and with a symbol comes a voice. I had many medical issues, and went to the doctor all the time. I knew there had to be symbol for people/kids like me; kids who’ve had eleven surgeries in eleven years, kids who’ve had countless tests and are treated like human pincushions. Imagine, all this happens to prevent cancer. There is no simple solution, only a constant set of routine poking, prodding, tests, surgeries and more!
We kept looking for a symbol. We found one when we came across the Global Genes Project. They stand for all rare and genetic disorders, their symbol is the denim ribbon, and their slogan is “Hope, it’s in our genes.” But, there was not a necklace, no jewelry. There was nothing to wear to help me show people, and tell the world about genetic disorders.
I asked my parents if we could get something made, and we did. My parents found a compassionate and caring jeweler who created the mold for the necklace I am wearing today. We reached out to the Global Genes Project again and again, in hopes they would sell the necklace too. Recently, they put a similar necklace on their market, and I can’t wait for it to become as popular as some of the popular pieces I have come to know.
Rare and genetic diseases are out there. Most are very rare, but there are over 7,000 of them. More work needs to be done individually and collectively, to get them the funding they need
In 2013, just about 18 months after our diagnoses, we celebrated “Rare Disease Day” which is February 29th – the rarest day- or February 28th on non-leap years, by handing out denim ribbons at our schools. We had assemblies, and I got to talk to my peers about what it was like to live with a rare disease every day.
I have had 4 knee surgeries for a vascular malformation in my right knee. I have a good deal of pain in my body, there, and pretty much all over. Some days I feel great, and other days I can’t get too far. One day in the spring of 2013, my mom was pushing me in a wheelchair to an appointment. I was annoyed by the number of people staring at me and talking about me. I heard things like, “lazy,” and “she’s not sick.” I decided I could be angry, or I could do something. While I definitely spent some time through the years being angry at some of the things – like running- that Cowden’s had taken from me, I decided instead I was going to DO something.
That night my Dad helped me design a business card that very briefly explains Cowden’s Syndrome. I have handed out hundreds to those who stare, and to those who just care. I like to spread the word, one card at a time.
This year, right before Rare Disease Day in February, I had my thyroid removed. Thyroid cancer is very common in young people with Cowden’s Syndrome. My thyroid had been watched since my diagnosis, and it went from having 4 nodules in 2011 to 16 nodules and 3 precancerous tumors in 2014. I was fortunate, but the surgery was rotten, and it has been hard getting the medicine quite right. I have been called a “Previvor,” which is someone who has an organ removed before the genetic cancer that is looming has a chance to strike.
This year, for Rare Disease Day, I decided to raise some money. We sold T-Shirts at my school and we had a fundraiser. The money all went to the Global Genes Project, and it felt really good.
At my old school, in February, I also met the Borough President. He took such an interest in my story, he made me feel awesome. I have visited Borough Hall a few times, and love talking with him. He has encouraged me to keep dreaming bigger and I will.
Two weeks ago my Mom and I signed a contract with the Hilton for a fund raising breakfast on February 15, 2015. We will be raising money for the Global Genes Project, and the PTEN foundation. The PTEN foundation is a new organization, working just for PTEN disorders like Cowden’s Syndrome. We hope to have raffles, and T shirts for sale. We plan to have music and fin.
We set up ticket sales through eventbrite, and we called it “Beating Cowden’s First Annual Jeans for Rare Jeans Fundraiser.” Sales are open to anyone who wants to come support two great causes.
I am on a mission to spread awareness and raise funds for diseases people know too little about. I will not be satisfied until each of them has the recognition they need, and the cure they deserve.
Thank you again for this award, and for encouraging me to continue my mission.
Here is a video of her speech.
And when she was met with a standing ovation there were tears in my eyes. Tears of pride.
One after another people approached her, and complimented her.
Not a single one would have known the strength it took for her to walk in the room today. The pain was unbearable. But she did it. With grace and a smile.
And in addition to the compliments, there were offers to help. Real, genuine offers.
We will Email some of our new friends tonight. And with their help, in February we will blow this fund raiser out of the water.
So it came as a little surprise when she was asked by the Borough President if she’d like to throw out the first pitch at a Staten Island Yankee Game to help draw attention to her platform and continue to raise awareness of Cowden’s Syndrome.
She didn’t hesitate with the “yes,” although she admitted not being too sure of what she had gotten herself into.
Thankfully my very good friend has 4 boys. And among them they were able to locate some gloves and some baseballs for a few impromptu pitching lessons. And I have to say they did a good job.
Leaving for the game she had quite a nervous stomach. Once we arrived she was focused on a “practice pitch.” Once that was accomplished we had a few moments to take in the magic around us.
60 of our friends and family had taken time out of their lives on a busy Wednesday night to support Meghan, and our need to raise awareness of Rare Diseases. In addition, it was team night for Meghan’s Swim Team, so there were many of them cheering as well.
When we had first set the date, I wasn’t sure how public to make the event. I didn’t want to put people out. So I posted it on my Facebook wall a few times. I was floored. And intrigued. My cousin Kim asked me to order 23 tickets for her. I didn’t ask too many questions. My family is big enough that cousins have to trust each other.
We were greeted by Kim, and there were T- Shirts. It took me a second or two to process. Then I read it. Looked around. Choked back a tear and threw it over my head.
The pitch went off without a hitch, and the announcer crammed so much information into a minute it was amazing. It’s hard to hear, but trust me!
PRESS THE ARROW…
The night was just fun. Exactly how summer nights should be. The weather was perfect. The company was outstanding.
And, even as the crowd began to dwindle, we sat to watch the game, with the Yankees down 4-1.
And in the bottom of the 8th as it neared 10 PM, Felix and Meghan made a deal. If the Yankees scored in this half, we could stay till the end.
Four runs later, they pulled off a beautiful “come from behind” win.
And as we walked to the car we stopped at the “Postcards 9/11 Memorial” and we remembered how very lucky we are, even in the midst of chaos.
That first pitch, symbolic of overcoming challenges. Of conquering fears, and of new beginnings.
That win the Yankees had just pulled seemingly out of thin air, was the result of a refusal to quit.
They worked like a team. They made it happen together.
A perfect ending to a perfect night.
Here are pictures of SOME of our team. There are just so many more that support us each and every day.
We LOVE you all. Thank you for helping us tell the world. We are …
BEATING COWDENS together.
There are not enough photographs, for those at the game, and for those who are ALWAYS with us in out hearts. There are not enough words to express our gratitude for the love showered on us so regularly.
It is only with your support that we continue to push on.
Meghan received a special invitation a few weeks back. She kept quiet about it – even though she was bursting at the seems.
On February 27th, as we were preparing for Rare Disease Day, Meghan met and shared her story with Borough President James Oddo. They hit it off instantly, and spoke like old friends for quite some time before he broke away to introduce the “Readers are Leaders” Campaign to our school.
Well after their extended conversation, the Borough President gave Meghan his Email address and reminded her she had a “friend in Borough Hall.”
They exchanged Emails at least once, and Meghan was THRILLED to receive an invitation to sit with the Borough President AT Borough Hall – 4PM, March 28th.
And the make the whole thing even more exciting, her efforts on advocacy and awareness and fundraising earned her the nomination for NY1 “Staten Islander of the Week.” (More on that segment which will air next Friday to follow.)
We arrived early, a rarity for us, but this was a REALLY big deal. Meghan had carefully selected a few gifts for the Borough President which were tucked in my bag. She proudly donned her “previvor” tee, and we sat anxiously in the comfortable waiting room.
We were given a tour of the basement and first floors, and showered with some gifts by “AJ.” A giant help, and a generally nice guy.
Then, it was time.
Meghan and I were greeted with hugs by our warm and extremely genuine Borough President. He repeatedly introduced Meghan as his friend. He told stories of how she inspires him. His staff and constituents walked in and out, joined the conversation, and came and went, as if a 10 year old in the office was a normal occurrence. They talked about health and advocacy, about her denim ribbon necklace, and her Cowden’s Syndrome Awareness card. They talked about her surgeries and her medical struggles, but also about reading, and literature, and the healing power of dogs. They have quite a lot in common and my heart sang to watch my 10 year old in the arm chair hold her own with a well-respected politician as if they had been friends for years.
The NY1 interview was comfortable. She speaks clearly, and flashes an award winning smile.
Meghan gave Borough President a rock with the word “courage” in it, after he shared a touching story with her.
He reminded her if she needs anything, she is to contact him directly. And as the year goes on as she thinks of new ways to spread the word about Rare Diseases, he will help in any way he can.
Her eyes brightened. Her goals got larger.
“You can be angry, or you can DO something, So I decided to DO something,” she told the reporter.
And she did.
And she will.
Watch out world.
Thank you Borough President Oddo. Staten Island is in good hands. You are one of the good guys.