Last year, in the beginning of her sophomore year at Champlain College, Nicole Towne was having migraine headaches she thought were from stress. In class, she could not see the whiteboard and had difficulty taking notes, which had never been a problem before. Even though her second year of college had just begun, she felt like she was already failing. She was in constant contact with her parents, who suggested seeing an eye doctor. Out of despair, she signed out of college, came home, and took their advice. That is when the real story started. The eye doctor, finding the back of her eyes in stress, sent her to a neurologist at Dartmouth-Hitchcock, who ordered an MRI. Soon after, she was diagnosed with a brain tumor and was rushed to the ICU to be monitored and treated. Her pediatric neurosurgeon was Dr. David Bauer, who performed the biopsy.
Nicole started walking in the CHaD HERO many years ago with a team called “Ya Rest, Ya Rust” that her grandmother walked with. She totally enjoyed doing something for others and raising funds for CHaD. When she began, the CHaD HERO was trying to get a world-breaking number of superheroes on the Dartmouth Green in Hanover and she loved being a part of that. Nicole eventually transitioned to participating in the hike, finding it enjoyable to walk along the trails. The 2018 CHaD HERO took place right after she was admitted to the ICU, and she was sad she would miss it. So, with her family’s help, she got her t-shirt and bib and walked around the ICU on CHaD HERO Day to justify the donations made in support of her walk. It was a very proud moment for her supporters, her family and the staff in the ICU.
The diagnosis of a brain tumor was a shock. At first, they thought that Nicole would only need radiation, but they quickly learned she would need to start chemo right away and then would need to go to Boston to get proton radiation every day for five weeks. Nicole, her mom Lynn, her dad Everett, and brother Ryan bulled through the sometimes dark days of treatment.
Nicole and her family have a fabulous support system… really quite incredible. Her parents’ employers, along with friends and family, started a fundraiser, her cousin Becca created the logo “NicoleStrong,” the name of her CHaD HERO team this year, and t-shirts were sold as part of the fundraiser.
A recent MRI shows she is now in remission. Nicole knows that this result does not happen for everyone with a brain tumor diagnosis. She will forever want to give back, as so much was given to her. Her family and friends look forward to hiking with Nicole on Team NicoleStrong at the HERO this year!
CHaD is very near and dear to Nicole. She even used her pic line scars on her arms to get her very first tattoo – Morse code for “Strong” and “Survivor”. She is both of those! And, she is back to Champlain College!
Our son Parker was born at 27 weeks 2 days, and was 2 pounds 2 ounces at birth. Thankfully he had no outstanding health issues, but he did spend 84 days in the Intensive Care Nursery (ICN), and continues to receive outpatient pediatric treatment. He and my wife received outstanding care at Dartmouth-Hitchcock and the Children’s Hospital at Dartmouth-Hitchcock (CHaD). Parker is now one year old, growing quickly, and developing a fascinating personality (on display below).
My wife and I are eternally grateful for the care that Parker received in the ICN and continues to receive at CHaD. It was this gratitude that pushed me to sign up for the 2019 CHaD HERO 50 mile bike ride. In addition, I received a hip replacement at Dartmouth-Hitchcock in June and am motivated to complete the half-century ride to hasten my own recovery while supporting the CHaD HERO. My work on the board of directors at David’s House completes the intersection of our lives with CHaD.
In short, I’m participating in this year’s 50 mile bike ride for three important reasons:
Parker continues to receive incredible care at CHaD;
There’s a natural relationship between David’s House and CHaD;
The ride will be held four months after getting my new hip – I love a goal!
Support CHaD kids like Parker by joining me on October 20th for the 2019 CHaD HERO!
I’m very grateful that when my mom got preeclampsia, she was sent to Dartmouth-Hitchcock Medical Center. I was born at 33 weeks gestation, and needed help regulating my body temperature and learning how to nurse. I spent my first 18 days of life in the Neonatal Intensive Care Unit (NICU) at CHaD. It was a scary time for my family, but the folks at CHaD kept me safe and helped me grow.
CHaD supports so many families with children that need help. That’s why my family and I participate in the CHaD HERO 5K Walk every year – to thank everyone at CHaD for the amazing, heroic work they do for people like me. Last year, I raised over $1,000 for CHaD through my CHaD HERO fundraising!
Join me this year on October 20th for the 2019 CHaD HERO!
“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
– Maya Angelou
When our son, Finn, was just a few months old, I was reading bedtime stories with our daughter (Finn’s big sister), Frankie. A thunder storm was booming outside. In many ways, the storm reflected our lives at the time – we were trying to wrap our heads around having two very young children, while also trying to understand the medical complications Finn faced associated with having Down syndrome; there was a steady storm of appointments, unknowns and learning that we were doing our best to manage.
As I closed the last book for the evening, a huge thunder clap boomed outside. Here is the exchange between Frankie (20 months) and I that followed:
Frankie: What’s that, Daddy (wide eyed)?
Me: It’s just thunder, Love. It will stop soon.
Frankie: I’m brave, Dad.
Me: I know.
Frankie: I’m not afraid of anything.
She then rolled over and promptly fell asleep with the storm crashing outside her bedroom window. Maeghan, my wife, tells our kids the same thing every night before bed; you are brave, kind, smart and strong. My conversation with Frankie that night helped me understand that our kids are listening to and watching what we do, all the time. In that moment, I knew that we had to be brave examples for Finn if we ever expected him to show the courage necessary to overcome the challenges that would surely be placed before him. Ultimately, we want what every parent wants for their child; for Finn to be independent, happy and make a positive impact on the world around him.
When Mae was 10 weeks into her second pregnancy, we learned that our child would be born with Down syndrome. In that moment, we did not feel courageous at all. We were scared of the unknowns and mourned some perfect life that we had anticipated for our baby. We feared that our family, friends and community would not accept our son because of his disability and that we would be isolated.
Turns out, we were afraid of all the wrong things. Finn is loved, welcomed and supported by his community. What we did not anticipate or adequately prepare for, was some of the medical complications connected to Down syndrome. While we were aware that in addition to intellectual and developmental disabilities, children with Down syndrome are at an increased risk for certain health issues, we also knew that every child is unique with their very own strengths and difficulties.
We quickly found out what this all meant for Finn. As a result, we have spent countless hours at CHaD for any number of conditions including Finn’s congenital heart defect, hypothyroidism, hypotonia, sleep apnea and digestive problems. This means visits with pediatric cardiology, endocrinology, and gastroenterology, to name a few. Our visits have ranged from a routine one-hour appointment to a multiple week extended stay, thanks to a lung infection when Finn was 18 months old. We know these visits will continue and Finn will have a lifelong relationship with ChaD – because of his heart defect, he will see a pediatric cardiologist for his entire life. While hospital visits can be challenging, we are grateful for this connection to CHaD.
Before Finn, Maeghan and I had very few interactions with hospitals or the medical world outside of check-ups and garden-variety sickness. During Finn’s initial appointments, we were guarded and apprehensive; constantly bracing ourselves for bad news. But what we discovered quickly is the staff, volunteers, doctors and nurses at CHaD bring a secret ingredient to how they care for children – the ability to make families feel strong and courageous during those very scary moments when they are exceptionally vulnerable.
I have a tendency to ask LOTS of questions when I’m anxious or afraid; it usually buys me some time to work through a troubling thought. As someone who received a mediocre grade in high school anatomy and physiology and has virtually no medical training, the answers we received were often confusing to me (Mae’s yoga background and training helps her in this department). If we didn’t take notes, I rarely remembered what the doctors and nurses told us. But we always remembered exactly how we felt walking out of an appointment (or an extended stay) at CHaD. We felt listened to, respected and supported. We were also able to advocate for our son and felt that we were doing so in a safe place. The CHaD community always made us feel courageous in the most difficult moments.
Finn is now 3 years old, and is as brave, strong, kind and smart as they come. He shows us how to be courageous every day; building friendships at school, climbing to the top of any playground and engaging in therapy to develop his communication and motor skills. He is bringing us a life full of light and inspiration. We attribute his confidence and positive attitude at medical appointments to his experiences at CHaD. He arrives at every appointment with a smile on his face, pulls up his shirt for the doctors and nurses to listen to his heart and blows everyone kisses before we head home.
We still have our scares; Finn will have heart surgery just after his 4th birthday. We know Finn will be giving out hugs and blowing kisses all the way into the operating room, inspiring us to find the courage to get through weeks of his recovery. As parents, we are very afraid. But we know we can tap into our bravery bank because we are surrounded by genuine kindness and caring that allows us to transcend the fears we may face related to Finn’s surgery.
We know every child at CHaD has unique health challenges. We also know one thing remains consistent – how the staff, docs and nurses make every child and every family feel courageous when they need it most. They understand when a family is struggling – maybe having a tough day because your child has been in the hospital for weeks and all you want for them is to be on the playground. At CHaD, they also understand that the cure for any illness is not only in surgery and medications but also in positive relationships and community.
This is our third year running the CHaD HERO for our team, Finn 321. By participating in the CHaD HERO with our family and friends, we again honor the overwhelming support and love of the CHaD community. We will always remember how CHaD made us feel when faced with medical challenges. Our hope is that every child’s visit to CHaD is like Finn’s – filled with compassion, kindness and, of course, courage.
Join us this year and look for Finn out on the course to get a little #Finnspiration.
The 2018 CHaD HERO raised over $800,000 for CHaD kids and families. What a HEROIC day! 3,000 participants joined us to run, walk, hike, and bike to raise money for vital services and programs for CHaD kids.
Our participants ran, walked, hiked and biked 13,000 miles combined.
330 student-athletes, parents and coaches from Team Finding Our Stride raised over $33,000 for CHaD Kids. Finding Our Stride is a school-based running initiative that works with students in elementary and middle schools in the Upper Valley, building fitness, self-esteem and teamwork.
400 EPIC volunteers helped make this year’s CHaD HERO a successful and safe event, and they raised over $22,000!
We had 80 corporate and gift-in-kind partners who went above and beyond to support this year’s event.
Avery, our 2018 Kid HERO, had the honor of kicking off the 5K and hike and sending off participants with well wishes. Her team, Team brAVERY, was created by her father after she was diagnosed with B-cell Acute Lymphoblastic Leukemia in the spring of 2017. This year, they raised more than $14,000 for CHaD kids, like Avery, who rely on programs and services CHaD provides. Thank you, Team brAVERY! Read more about Avery’s heroic journey HERE.
“We hope our small effort of raising money and participating in the CHaD HERO helps every family that has their world flipped upside down and needs the full army of support that CHaD provides.” – Chris Smith, Avery’s Dad
The CHaD HERO matters because proceeds help fund critical programs and services that support our young patients and their families. Such programs include:
Molly’s Place, a soothing space with an engaging activity area for children, plus health information and resources for families.
Thank you so much to our fundraisers, participants, volunteers and donors for allowing kids to get back to the business of being kids! Check out our 2018 CHaD HERO Annual Report for details about YOUR IMPACT. We couldn’t have done it without each of you.
Mark your calendars – the 14th Annual CHaD HERO will take place on October 20th, 2019. Registration opens Spring 2019! To learn more, visit: chadhero.org.
My son, Connor was diagnosed with Bicuspid Aortic Stenosis after a routine well child visit when his doctor heard a heart murmur. After following up with CHaD Cardiologist, Dr. Johnson, he had his heart procedure done when he was 2 years old. Probably the scariest time of our lives was in front of my wife and me as we planned for the surgery. The support staff the day of his procedure was nothing short of amazing, in keeping us calm and together (as best we could be). Long hours of waiting as his heart was being fixed.
He came out of surgery with flying colors and is now a happy and healthy 11 year-old in the 6th grade. He has no restrictions as to things he cannot do. He follows up with his cardiologist yearly and continues to do fine.
I saw the signs for the CHaD HERO event in the hospital during our brief stay (we are lucky and were in on a Tuesday and out on Wednesday, and back at his gymnastics class on Friday) and knew I wanted to help give back to CHaD. What really made me want to give back was when I was walking through the Pod the night after his surgery was done. I was able to see into other rooms where I saw other kids in far worse shape than my own son. No kid should ever have to go through life like this, and neither should their families.
I do the CHaD 1/2 marathon in hopes of raising $1,000 or more each year that I have been running (8th year this year) not for my son but mainly for every other child and family in far worse situations. Like I said, no family should have to go through the heartbreak of having a child in dire situations. Kids are supposed to grow up care free and have a zest for life and not have to deal with being in the hospital.
I am forever grateful for CHaD and glad there is a top-notch organization like it in the state of NH. This is why I run and raise money for CHaD. I will try to continue to do it for as long as my great Family and Friends help me give back!
So from Connor and my family. Keep up the good work CHaD!
Supporting the CHAD HERO race has enabled us to keep the memory of our beloved Brady alive. Each year, our superhero family and friends join us in putting on our running shoes and team Brady t-shirts. We run to support the child life team. Although Brady was only part of the CHaD family for a short time, the care he received was stellar. Everyone from the nurses, social workers, physicians, surgeons and child life specialists did their best to help our family. After our son passed away, we wanted to do something to thank CHaD.
Throughout our ordeal, the child life team was there to hold our hands, sing a song, and provide emotional support to our family. Sadly, the child life program doesn’t get reimbursed by insurance. They needed private donations to help support their team. We knew that our monetary donations could help fund this worthwhile position so that even more children and families could experience this help. Since 2012, we have raised over $25,000 for CHaD’s child life team.
The CHaD HERO race is an amazing event that helps us remember our son, give thanks to our local children’s hospital, and support the child life department. Please be sure to say hi to any Team Brady members you see racing this fall.
River Valley Club (RVC) is committed to supporting the 2018 CHaD HERO, and we are excited to share some of our team’s top training tips with you. Looking for camaraderie and not on a team yet? You are welcome to join ours! RVC is offering fundraising incentives to help Team RVC members prepare for the 2018 CHaD HERO, including a dedicated group training program designed by RVC Trainer, Tara Ebejer for those who raise $250. In addition to the free training, you also receive a free membership with full access to the Club during the training period dates if you raise $500 or above. Already on a team? Consider developing your own set of incentives to keep your members motivated and optimize their fundraising efforts.
How to Take Your Training from Mindless to Mindful:
Creating a mindful training program will ensure that your body is properly conditioned to step onto the start line, injury free and ready to go. There is nothing more disappointing than not being able to step onto the start line on race day due to an injury or lack of preparation. Whether you are training for the 5K walk or run, hike, bike or half marathon you will benefit from these 5 Mindful Tips:
INCORPORATE FLEXIBILITY TRAINING:
More than before, flexibility training has become a key component in all training programs. Some benefits to flexibility training are: correction of muscle imbalances, increase in joint range of motion, decrease in muscle tension, relief of joint stress, and maintaining muscle optimal length. Runners should focus on calves, IT Band, Quadriceps, hips and hamstrings. Before your workouts you should be foam rolling (self-myofascial release) followed by dynamic stretching. Foam rolling is a stretching technique that focuses on both the neural and fascial systems in the body which are fibrous tissues that surround and separate muscle tissue. Adhesions or knots are created in the fascia with everyday activities and exercise. You use a foam roller to apply gentle force to the knots. The muscle fibers are altered from a bundled position into a straighter alignment with the direction of the muscle or fascia. This helps restore the body back to its optimal length of function. Remember to hold the force onto the knot for 20 seconds, keep relaxed and breathe! Dynamic stretching of muscles using force production and momentum to move the joints through full range of motion, so stretching while moving. Some examples are inchworms, spidermans, pigeons, etc. At completion of your exercise session, you should incorporate static stretching. This is holding a stretch, without movement for 30-60 seconds.
INCORPORATE CROSS TRAINING:
The number one reason to cross train is to prevent injury. Doing the same exercise (running) over and over again can cause an overuse injury. By including cross-training exercises you can help your body recover while building strength, endurance and flexibility. Incorporate exercises for your core, such as planks, bridges and push-ups. Strengthen your legs by performing lunges and squats. There are so many benefits to resistance training!
SLOW INCREASES IN YOUR MILEAGE AND CROSS TRAINING:
It is never a good idea to go from ZERO to 100 in any activity. Start out slow and add mileage by about 10% per week. Create a training schedule and work out your weekly mileage. Start easy with the cross training such as bodyweight squats before weighted squats.
INCORPORATE REST DAYS AND SLEEP WELL:
You do not need to be training 7 days a week. Rest days allow your body to recover and adapt. Resting is just as important as working out because it is an equal part of the total process. It allows your muscles, nerves, bones and connective tissue time to rebuild. Schedule in rest days and listen to your body. 2 days of rest is ideal spread out during the week. Sleep is very important for overall health and studies show that sleep deprivation correlates with many diseases, including obesity and heart disease.
INCORPORATE PROPER NUTRITION:
Fuel your body for performance! The best way to do that is to eat unprocessed, whole foods. Eat a combination of meat, fish, eggs, vegetables, fruits, nuts, seeds, as well as healthy fats, and oils. Every meal should include a protein, lots of veggies and carbs such as potatoes, sweet potatoes, whole grain oats, etc. Carbs are not the enemy and you need them to fuel your body. Avoid processed foods and sugar.
To find out more about joining Team RVC please contact Team Captain, Taylor Haynes (firstname.lastname@example.org).
Sutton’s journey with CHaD started a little over a year ago when, out of the blue during a normal childhood illness, she started acting strange. We went to urgent care, where her condition quickly deteriorated. We ended up rushing to the ER at Concord Hospital where it was found that her blood sugar was dangerously low. Thanks to the amazing and quick work of the ER, Sutton was stabilized. It was only after that we realized the extent of what had happened. Her blood sugar had dropped to 17, which is right around the level of going into a coma. For days, we were in the hospital with Sutton still having a hard time recovering. For days, we had doctor after doctor come in with a million theories and a million tests. They all came back without answers. Finally, Sutton recovered and we were able to go home. While we so thankful that our little angel came through this no worse for wear, we were terrified not knowing what had caused this, how to treat it, or whether it was going to happen again. When we were discharged, we were recommended several time to meet with Dr. Filiano at CHaD. Every doctor that we talked to seemed to know about him and they all seemed to treat him with a sense of reverence; they all said that he was the doctor we needed to see. Forget Boston they said, he’s the one you need.
A few weeks later we were able to meet with Dr. Filiano. For the first time since Sutton got sick, we felt a bit of relief because we felt that we were talking to a doctor who really understood what might be happening and who really might have answers. However, the mystery was not easy to solve. Over the next 6 months we saw Dr. Filiano numerous times, had MANY tests done (including 24-hour EEG, inpatient MRI/MRA/MRV, purposely letting her blood sugar crash to get specific blood and urine labs, genetic testing, etc.). Nothing gave a clear diagnosis. During this time, we were terrified (in a literal keep-you-up-at-night terrified sense) of many of the really horrible diseases and disorders for which she was being tested. Also during this time, Sutton was repeatedly hospitalized in Concord with Dr. Filiano remotely giving all of the care instructions to doctors at that hospital.
Finally, almost 6 months after everything started, we received a diagnosis of exclusion (ketotic hypoglycemia). This disorder is not widely understood but we are lucky with this diagnosis compared to all of the alternatives, because Sutton will live a happy, healthy, and amazing life! While we have to take some extra steps to watch her blood sugar, and we have to go into the hospital for IV fluids on occasion, we are extremely happy that Sutton will likely outgrow this condition in a few years! We’ve all settled into a good routine and she’s handling everything so well. We are truly blessed!
Throughout this experience, we faced many horrifying potential diagnoses. While we were fortunate that all of these tests came back negative for our daughter, we were heartbroken to think that for some families, this is not the case. To imagine anyone else going through these horrible conditions made our hearts break. We saw little glimpses of it with kiddos in waiting rooms we shared or beds near ours in the hospital. It’s hard to think that innocent, amazing kiddos (and their families) are battling things that are so unimaginably difficult.
What I decided is that I’m going to put my energy to use for kids like Sutton, which brings me to the CHaD HERO bike ride. In browsing online, I stumbled across the ride. It seemed like a perfect fit! I had just been given a hand-me-down road bike and, while I had never really ridden more than a couple of times in my life, I knew that I wanted to do this ride. I wanted to do it because I am so grateful to CHaD. I am thankful that we had world-class doctors available who could help us navigate through a really scary time in our lives. I also want to do ANYTHING I can to help those families who did not get the amazing news that we did.
To be honest, I was afraid of the $500 minimum fundraising goal for the bike ride. However, the outpouring of support was immediate and humbling. In a few short days, we reached the fundraising goal due to a few generous donations from family, friends, and coworkers who all were by our sides through Sutton’s ordeal. They all knew what we went through and they wanted to help others on their own journeys. I hope my ride supports kids like Sutton on their path to healing.
Our son Charlie was born on June 2, 2003. Twelve hours after giving birth Charlie began turning blue. These episodes continued for the next few hours until our local hospital requested the Dartmouth-Hitchcock Advanced Response Team (DHART) to come airlift him to the Intensive Care Nursery (ICN) at the Children’s Hospital at Dartmouth-Hitchcock (CHaD). After arriving at the ICN, the doctors began lots of testing on Charlie to find out exactly what was going on with him. It was quickly determined that Charlie had survived an in utero stroke. We learned that the episodes that Charlie experienced shortly after birth were seizures. Our family is forever grateful for the care we received from CHaD’s ICN and the DHART crew. We credit them for saving Charlie’s life!
As a result of the in utero stroke that Charlie survived through, he has severe weakness on the left side of his body, developmental delays, as well as epilepsy. Back in June 2003 after Charlie had survived his stroke we really thought the worst was behind us, our little boy survived an in utero stroke. Little did we know the word epilepsy would become a word we would use daily in our life. Charlie fights seizures on a daily basis. Thankfully, with our CHaD pediatric neurologist and medication we are able to reduce those numbers.
Watching Charlie fight to get through every day of his life for the last 14 years has given me the passion to train for the CHaD HERO half marathon. Charlie will be with me every step of the way, as I will be pushing him 13.1 miles in an adaptive jogger. There are moments throughout training for the half marathon that I just want to give up — running has never been one of my favorite pastimes. When one of those moments occur, I think about how strong Charlie is and how he’s a Survivor. If he can survive all he has, I can easily survive a half marathon and the training that goes with it. I run for Charlie because he brings out my will to run.
Charlie’s Dad (my husband) and our daughter (Charlie’s younger sister) will be running the CHaD HERO 5K and they will be at the finish line cheering on Charlie and me as we complete the half marathon. They will be joined by Team Charlie’s Angels, made up of 15 other family and friends who all support the CHaD HERO.