13.1 miles? With diabetes?

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Written by Tammy and Jackson Lowry

I learned about the Isabella Santos Foundation about 3 years ago. Because I work in the media marketing industry, somehow the video we just watched landed in my lap. I hit play . . . and then I was ugly crying in my office at work, blowing through a box of Kleenex, and was very moved by the video and organization.

Next thing I knew, one of my very dear friends – Jaymie Nielsen – posted on FaceBook that even though she was not a runner, she was going to join Isabella’s Dream Team and train with a group of people to run a half marathon.

Upon inquiring about the Dream Team, I found out that an amazing person, Coach Tom, started the Dream Team and coaches everyone through the training. We all have a training schedule that we do on our own throughout the week. Then, we come together on Saturday mornings, run as a group and raise money along the way. So, I joined the summer of 2015.

The training starts in July, and we are all training for a half marathon that falls in November.  There are a few different regional races to choose from.  We were about 3 weeks away from the Charlotte Half Marathon, and life threw me a curve ball. My son, Jackson, was admitted to the hospital and was diagnosed with Type 1 Diabetes. I thought – it’s just diabetes, right? Don’t you just take a pill and manage what you eat? It is going to be fine. But I clearly didn’t understand the diagnosis. I had to get up with him at midnight and 3am every night for the first few months in order to make sure his blood sugar didn’t go too high or too low. Otherwise, he would go in to a coma.

I was exhausted. I had to swallow my pride and email Coach Tom, Erin Santos and Jaymie Nielsen to tell them I just couldn’t run the race that year. I had no energy and Jackson needed me. Of course they understood.

Erin said she’d run for me – even though she’d already completed her own half marathon for the season. I thought YES – she is going to make me look GREAT. She is a great runner. She will get a much better time than I will. But in all honesty, I was just relieved someone could use the race bib.

The morning of the race, I saw a picture on FaceBook. Erin wrote on one arm “Isabella” and she wrote on the other arm “Jackson”. I started to cry. This race was not about Jackson. It was all about Isabella and helping find a cure for pediatric cancer.

This generous gesture was very touching to me. That was it. I am all in. I will do all that I can to help the Isabella Santos Foundation.

I wasn’t the only one who was all in . . . . Jackson was very moved and inspired. He asked me if he was old enough to run on the Dream Team. Even though he is diabetic, he still knew he could manage it and run for Isabella.

So our team welcomed Jackson at the age of 12 with open arms and we trained the summer of 2016. And after the first group run, he was hooked. He got it. And while I encouraged him at every run, the mom in me still had a nagging concern in the back of my mind – will he be able to run 13.1 miles? With diabetes?

The night before the race, Jackson and I were preparing for the race. We decided to agree upon some ground rules . . . .

Jackson:

-Stay together. If one of us needs to slow down, then tell the other and slow down.

-Run the entire time. Don’t stop.

-Get a drink of water at every water stop.

-Every 3 miles, eat some energy beans.

“My mom and I were doing great. I could tell she was struggling a little bit, but we followed all of our rules. When we hit the 10 mile mark of the race, I started to slowly pull away from her. I was excited and having a great time. I ended up sprinting the last 3 miles of the race, and I finished 13.1 miles in 2 hours and 9 minutes. It was the most amazing feeling to cross that finish line.”

I, on the other hand, had one of the worst races ever. I had a terrible cramp in my feet and toes. But I was determined to not stop and to follow our rules.

Even though I was in a lot of pain at the end of the race, we did it. It is one of the most amazing experiences I have ever had . . . and I got to do it with my son!

If you are a runner . . . . or want to be a runner . . . or want to be inspired . . . or simply volunteer or make a donation, I encourage you to do so with the Isabella Santos Foundation. You will not regret it. I promise.

When you are a parent and you watch your child be diagnosed with any illness or disease – – you do all that you can to fight and find a cure. The Isabella Santos Foundation does just that for all children with neuroblastoma and other rare pediatric cancers.

Cancer Stole My Sister

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Speech given by Grant Santos (Isabella’s Brother) at the 2nd annual Coffee for a Cure Events.

Grant Santos & Greg Olsen, Coffee for a Cure Day 1. Photo courtesy of Stikeleather Photography

Hi, my name is Grant Santos and I am Isabella’s little brother.  Isabella was diagnosed with Neuroblastoma just 6 days after my 1st birthday so I never really knew her without cancer.  My Mom and Dad tell me stories all the time about my life with her.  We did everything together and I brought so much comfort to her when no one else could.  I would come and visit her in the hospital and crawl right up in bed with her as we would watch movies and laugh while we ate dinner together in her bed.  I would walk around the hospital with her as Mom wheeled her IV pole up and down the hallways.  She would show me around and introduce me to everyone.   She was so proud of me.  We took so many trips together.  We loved going to Disney World and running from ride to ride as we got to meet every Disney Character you could imagine.  We had special days at with the Panthers and got to meet people like Steve Smith, Tony Stewart and more.  Our whole family moved to New York City for a couple of months with Isabella got cancer in her brain.  We stayed in an apartment that overlooked the city.  I would play trains all day long while I waited on Isabella to finish treatment, then she would come home and Mom would take us to the park and play for hours.  People would always look at Isabella in a weird way because she had a big scar on her bald head but I never even noticed it on her.  To me she was always beautiful.  For the years during Isabella’s treatment, I became her best friend.  She would always ask me to hold her hand when she would get her line put in her chest.  It was hard for me to watch, but I knew that she needed me and I would help her be strong.  Near the end of her life, she didn’t want to be around very many people.  But, I was always allowed to be around her.   She would let me crawl in bed with her and watch movies and rub her back.  She would ask about my day and I would tell her all the things I did and she would tell me about her day at home or in the hospital.  We would wrestle with Daddy and laugh and sing at night together before we crawled in bed each night.

Grant Santos & Molly Grantham, Coffee for a Cure Day 2. Photo courtesy of Stikeleather Photography

These are all stories that my Mom and Dad tell me.  But I don’t really remember them.  I’m thankful for pictures and videos that tell me this story too, and I hope one day these memories become more real to me.  I remember her red hair, and how she said my name “Graaaant” when she would call for me.  I remember she like Taylor Swift and Ariel and American Girl dolls.  I remember the day she died.  I was at a summer camp and my Grandma came to pick me up.  I remember coming into Mom and Dad’s room and she was asleep in their bed and I told her goodbye and that I loved her.  I remember going to Calvary for her funeral and that my cousins were there and Miss Chrissy read a poem.  But I don’t remember much more than that.

It’s crazy to think that we were best friends, but I can’t remember it.  But that is what pediatric cancer does.  It steals people from you.  It steals sons and daughters, it steals brothers and sisters, it steals best friends.  It also steals the possibility of creating memories.  Cancer stole my sister, my best friend and a lifetime of memories that we were supposed to make together.  We were supposed to be in high school together and be at each other’s college graduations and weddings.  We were supposed to be aunts and uncles to each others kids and our kids were going to be cousins who would go to the beach together.  We were supposed to be able to call each other and complain about Mom and Dad and have secrets between us that we would never tell them.  But none of that will happen.

Now, the only way I can be the best brother I can be is to bring her flowers to her site and talk to her in my mind.  But the other thing I can do is help to find a cure for the disease that took her from me.  My gift to her to prevent someone else losing their best friend too.  She should still be here with me today, riding the bus to school, laughing, playing and fighting – the way that brothers and sisters were meant to be.  But she’s not.

I hope that you will give today in honor of my best friend and sister Isabella.  Together we can make a difference and stop this awful disease from taking one more kid from a family.  I know she is looking down on us and is hopefully proud of the brother that I’m still trying and will always be to be to her.  I miss her so much.

Thank you.

The Comedy Zone: Drafts + Laughs, April 6

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A REALLY funny night for a GREAT cause at The Comedy Zone in Charlotte! Headlined by the hilarious (Charlottean turned New Yorker) Paul Hooper and featuring a man who is a lawyer AND a comedian (don’t worry, he’s a much better comedian than he is a lawyer) Will Jacobs and emceed by former Woody and Wilcox Show intern, John Colwell. Your admission gets you a ticket to the show, a commemorative drinking vessel and a delicious “Woody and Wilcox Hop Experiment” beer from NoDa Brewing Company. Proceeds go to The Isabella Santos Foundation. Finding a cure for rare pediatric cancers.

Check out Paul Hooper here https://www.youtube.com/watch?v=xhZlul1cSYI

Thank You!!!!

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Sophia at race startThe #ISFTagTeam

TOOK ACTION TO ITS BEST

…. and the Results are IN!

To Our Incredible Supporters,

Words cannot express how grateful we are for you.
Grateful. Humbled. 

Appreciative and amazed….by each and every single one of you.
What a TEAM we have in you!

Thank you doesn’t seem to be enough when we look at what we have all managed to accomplish over the past 8 years. It is because of your continued dedication to helping us see through the vision to honor Isabella’s dreams during her short, but very inspiring life. Cancer may have taken her from this world- but it didn’t win. As we have said- Cancer messed with the wrong kid because we are not giving up. We are only getting better!

Thanks to YOUR support and unyielding dedication over the last 2 months – 

the ACTION TAKEN through various fundraising events, including the 5K for Kids Cancer, the Brew Bash, the ongoing efforts of the Dream Team training for their 1/2 marathon, as well as several other events has grossed over…

 $405,000! 

It is simply AMAZING and it is because of YOU.

You joined our team, alongside of so many others and …. TOOK ACTION!

In the first year- ISF raised $7000 and had 180 people registered to run. This year, the race alone raised over $300,000 and had over 2000 registered to run. Look where we have come…and we have done it, TOGETHER!
We are amazed and would like to take this opportunity to say THANK YOU!
Thank you for fighting this fight with our team.
It is incredibly important to us to keep Isabella’s dreams alive and do what we can to fulfill her wishes of a world with no more cancer.

It is hard to articulate just how much we appreciate the community support we receive and you continue to amaze us each and every year!!
We are so grateful for our sponsors, our donors, our local celebrities, our local schools, our local sports teams, our 5K runners, our 10k runners, our fun runners, our phantom runners, our fundraisers, our vendors, our volunteers, our local businesses that give to our auction, host IB days and for each and every person (near and far) that simply listens and shares Isabella’s story.
It ALL works together in a beautiful way to truly make a difference and impact others.

Sometimes it can be difficult to keep going when we know our efforts will not bring Isabella back- but in that same breath- we know that is the exact reason why we HAVE to keep going. Isabella would want for us to help the other children fighting today. Her life WILL change the life of others.

We hope that you all feel as appreciated as you are and that you feel the passion that each of us puts into everything we do for Isabella, for her foundation and for all children fighting pediatric cancer right now! Our hope is that we help make a shift in the future of this disease and will help fund research for a CURE! We look forward to communicating soon, where and when these funds will be distributed! 

We cannot thank you enough for all
that you do to keep Isabella’s spirit alive and well!

With utmost sincerity and very full hearts,

Thank you.

Erin and Stuart Santos, along with the ENTIRE ISF TEAM

Fight Cancer. Run with us.

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ISABELLE’S DREAM TEAM – 2015

By Tom Patania

On March 9th, we unveiled the details for Isabella’s Dream Team – 2015. This date was picked specifically because it would have been Isabella’s 10th birthday. Not only is she the Founder of ISF, she is the inspiration behind this team. Our focus is about Isabella, and following her dream of creating a world with “no more cancer.” We continue the fight for her and the many children that are also battling cancer.

Last year, in our inaugural year, the team was filled with passionate and selfless individuals that came together to surpass our wildest expectations. The 2014 team raised $34,000. This program continues to be a volunteer based, grassroots effort without the high overhead of a large charity.  We ask each participant to fundraise a minimum of $500 (but our hope is that each will shoot for much more than that).  What we lack in advertising dollars we make up for with heart and community.

 “Though she be but little, she is fierce.” – Shakespeare

IB in race tIn an effort to grow our team and our impact, we are recruiting runners and run/walkers that want to join our mission of helping make a little girl’s dream come true.

This year each athlete has a choice. We will be training for two races:  Rock N Roll Savannah (Nov 7th) or Thunder Road (Nov 14) half or full marathons.  With this being a volunteer effort, we ask that each participant sign up for their race of choice. Our hope is that the athletes that choose to run RnR Savannah will take part in supporting and cheering for those that are running Thunder Road, and to support our Charlotte community. The ISF10K/5K for Kids Cancer (Sept 26th) will be a part of our training program, so each team member will want to sign up for that race as well.

Official team training will start the week of July 13th and training schedules will be available for both distances. Included in the training schedule will be speed & hill workouts (Blakeney area) and Saturday long runs (various locations – early morning). I highly encourage all of you to attend as many team runs as possible.

TEAMWORK MAKES THE DREAM WORK

dream teamHow to join the team?

  • Email Coach Tom at tom@isabellasantosfoundation.com with which race and distance you’re interested in and your t-shirt size.
  • Create your First Giving fundraising page by selecting: Isabella’s Dream Team 2015
    • Be sure to make this page personal. We do not ask you to cover the difference if you cannot hit $500.  We only ask for your best effort.
  • Register for your race and distance: RnR Savannah or Thunder Road
  • Get Social: tag five friends to let your network know you’ll be running with us this summer.