A Diving Moment

This was diving weekend at Camp Riley. On Saturday, through the generosity of Epsilon Sigma Alpha (ESA), three campers began their journey to become certified divers by learning introductory skills in the Butler University pool. The next day 25 plus campers were introduced to scuba diving in the Bradford Woods’ pool by the dynamic teaching duo of Michele and Bill Monsam, who have traveled from the Cody Unser First Step Foundation in Albuquerque to volunteer with the campers for five years.

Diving Photo

Dive Instructor Bill Monsam with Teddy Coppes, on the left, and his cousin Sam Pepper, who will be Teddy's dive buddy as he works to become certified.

As there have been each of those five years, there were many memorable moments from the weekend. Funny, moving, courageous moments. And this year, for me, one completely unforgettable moment.

M had finished having a great time diving when I joined her in the shade at the picnic table by the pool. M has cerebral palsy that affects her speech, mobility and movements. As she sometimes struggles to talk, she has the most remarkable habit of stopping at the end of a sentence, looking into your eyes and engaging you in a moment of mutual understanding.

She was telling me something about her family when she stopped and asked me if I knew why she was sure there was a God. She explained. “I wasn’t supposed to ever be able to think or to talk when I was born. I was just supposed to be like a baby all of my life. But today I went scuba diving. I breathed under water.” She paused and looked into my eyes and asked, “Do you get it?”

What happens during diving weekend at Camp Riley is about so much more than diving.

I get it.

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“Beyond Beautiful”: Carter’s Camp Riley story

One-of-a-Kind Kid

Carter has loved his adventures at Camp Riley

My son Carter Patrick is one of a kind. He is almost 10 years old, and while all kids are made from their own special mold, Carter is truly an individual.

Carter has a chromosomal condition that is so rare there isn’t even a name for it. There is a partial trisomy of his 16th chromosome and a slight deletion of his fifth. Early on he faced more medical issues including seizures. His condition has left him non-verbal.

We don’t quite fit into the autism spectrum community, nor the Down Syndrome groups. Instead, we are often isolated and lonely, thrust into the role of accidental trailblazers.

A Rare and Exhilarating Adventure

With such an uncertain path, there aren’t many opportunities for Carter to just be a typical kid. Camp Riley has been one of these exhilarating experiences. It is beyond beautiful to see him have the chance to go off without us and have fun.

I love to see him gaining some independence and learning about life outside of the family that adores him so much. He gets to explore and be free from misunderstanding, judgment and ignorance.

Investing in Kids

This was Carter’s second year at Camp Riley. They have the most unbelievable staff! I was so touched and impressed at the attention to detail. Knowing that he was a returning camper, the staff made sure he got to stay in the same cabin as he did last year so he would be more comfortable.

They invested time in getting to know Carter so they could help him blossom. They even pulled out the guide I had made last year about Carter’s own personal sign language!

Joy Beyond Words

When camp was over, I was worried about how I would know whether Carter had really enjoyed himself since he is non-verbal. But when the staff informed me that he was doing his famous “jump and spin” move, I knew that he had loved his experience. He normally doesn’t like to sleep away from home, but he adored Camp Riley.

A Remarkable Gift

Camp Riley is very affordable for families like ours thanks to donors who support Camp through Riley Children’s Foundation. There is a sliding scale depending on each family’s income and circumstances. Expenses for therapies, medical bills, medications and durable equipment can rapidly drain a family’s resources, and we are still on a wait list for a waiver to help us with Carter’s needs. The extra expense that Camp Riley absorbs for each child is a truly remarkable gift.

We feel so blessed by what Camp Riley has offered to Carter, and to us. We have a supportive family, but it has been uplifting for us to have a little break, knowing how much fun Carter is having and what great care he is receiving.

Thank you, Camp Riley, from my family and me, but mostly from an uncommon little boy who jumps in joyful circles when he has had the time of his sweet life.

If you would like to make a gift to Camp Riley to help other children enjoy this empowering experience, please click here.

 

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Elise’s wagon: A special memorial to my niece

My family and I released a Riley wagon into the fleet in memory of my niece, Elise

Elise Ryne Rochman is my niece who passed on January 28, 2011 at the age of six after living with Tay-Sachs Disease. While she was never a patient at Riley Hospital, I had the chance to share her memory with my fellow team members as well as children and families here.

As a donor to Riley Children’s Foundation, I was presented with the opportunity to dedicate a Riley Red Wagon in her name. Not only did I get to name the wagon, but I also had the privilege of having my sister and brother-in-law travel from Illinois to participate in the release of the wagon into the fleet.

I do not have adequate words to express how meaningful this experience was to my family. The best part for me was seeing the smile on my sister’s face and my nephew jumping up and down with excitement (squealing “Lisee’s wagon!”) when a family checked out Elise’s wagon for the first time. My sister was deeply moved, and could not stop saying how much she appreciated this special memorial.

Each child’s life has profound purpose.

How true.

Red Wagon Fund

Red wagons help families easily and conveniently navigate Riley Hospital, as well as offer children a fun diversion from what can be a stressful time. For a gift of $1,000, a personalized “license plate” acknowledging your gift will be attached to the back of a wagon.  Call 317-634-4474 or email mives@rileykids.org for more information.

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Our Camp Riley Love Story

Finding Joy at Camp Riley

Emily Church with Camp Riley camper Nicholas Hiles

Camp Riley provides an amazing experience for hundreds of Hoosier children with physical disabilities each summer; however it also leaves a lasting impression on the dozens of young adult staff who work there. The children, adventures and relationships create a life-changing impact that lingers long after summer ends.

My camp experience in 2009 started out as a summer job prior to my first year of occupational therapy school, but it quickly became something so much more than that. At Camp Riley, I found joy and excitement in seeing children accomplish things that most people would never dream they could do. I loved experiencing the contagious enthusiasm of campers as they tackled new challenges and lived life to the fullest. Additionally, it solidified my career choice by learning how to adapt everyday activities (and not-so-everyday activities!) for kids with a vast array of physical abilities.

Our Love Story Begins

For some people, Camp Riley might mean a renewed outlook on their abilities. Others may find a future career path. But for me, these summers also led me to my future husband.

Emily Church and Matthew Miller met and fell in love as counselors at Camp Riley

During my first summer at camp I met Matthew, a gregarious cabin leader who had returned after previously working there in 2007. We had many mutual friends, but only fleeting interactions with one another throughout the following months. We both returned to Camp Riley in 2010 and were immediately drawn together as returning staff members. Our relationship grew throughout that summer and continued long after the last camper had left. Three years later, Matthew proposed to me at Bradford Woods (home of Camp Riley) on our favorite spot overlooking the lake.

Our Wedding Gift to Campers

Emily and Matthew are making a gift to the Riley Children's Foundation Campership fund in lieu of wedding favors

We are getting married in August with multiple former camp staff (and campers) in attendance. While we are excited to start a new chapter of life together, camp will always be something that we share and look back on fondly, and will continue to be a part of our lives.

To honor a cause that is near and dear to our hearts we are making a donation to the Riley Children’s Foundation Campership Fund in lieu of wedding favors.

We are delighted to be able to give back to an organization that has made such an impact in our lives. We hope that our gift may impact the life of a future camper and their family.

If you would like to join Emily and Matthew in making a gift to Camp Riley, click here and contribute today.

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“People want to help.” Why golf legends and French Lick Resort got behind Riley

Last year, my colleagues and I at French Lick Resort held our first-ever Legends of the LPGA Championship. I’m not a real experienced golf guy so I wasn’t sure of what to expect with all of these big name golfers. I was drafted to be the first tee announcer—something I’d never done before. It turned out to be an utter delight. These players are the greats of their era and they still swing a mean and accurate club. But now they enjoy it a whole lot more. As Jan Stephenson told me, “We didn’t have time to stop and smell the roses back on the tour. Now we do and it’s an entirely new experience.”  The Legends go out of their way to acknowledge and thank the fans, and they savor the event at the Resort’s gorgeous Pete Dye course. But as fun as it all was in 2013, we’re even more excited this year.

The Best Motivation: Riley Kids

We have partnered with Riley Hospital, with a $50,000 pledge by Resort Charity Events and plans to do even more. As our resort Vice President Joe Vezzoso says, “Our new partnership with Riley Hospital for Children has given the Legends tournament a new energy level.” A big part of Joe’s job has been securing sponsorship dollars to help make that happen. He and former Pete Dye pro Jan Tellstrom have been working hard, but having Riley’s great reputation behind them has made the daunting task easier.

It’s hard to beat Riley as a motivation factor. As our Director of Golf Operations Dave Harner puts it, “Our folks all seem extra motivated because we’re working for Riley and the kids. It seems like everyone on the staff has a Riley connection or knows someone who does. People want to help. And that goes for the Legends players too.”

Our Inspiring Ambassador

Cancer surivor and LPGA Legends Championship Riley ambassador Ashtyn Brown

Then there’s Riley cancer survivor, Ashtyn Brown. Everyone here at the resort is smitten with Ashtyn. (How could you not be?) She was amazing at our winter event at Riley Hospital in which we announced the partnership. She is a great Riley ambassador with a powerful story: a two-time pediatric cancer survivor whose life was saved at Riley, Ashtyn has gone on to become a collegiate golfer with an inspiring outlook on life. Ashtyn will be helping us on our media tour along with her new found friend, LPGA Legend Rosie Jones.

I personally can’t wait to have Ashtyn and all of the Riley folks here at the Resort and up at the Pete Dye course for the LPGA Legends Championship event August 13-17. I hope it turns into a big, happy Riley reunion. We want the kids and families to come and join in what we hope will be a celebration. (Saturday is Riley Family Day at the tournament.) I know the Legends will love it and be in the thick of it, and I will too!

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“I love having the chance to empower children.” A Child Life Specialist’s full-circle Riley story

Sisters and Riley colleagues Elizabeth Carter, RN, and Certified Child Life Specialist Abigail Rainey

Everywhere you look at Riley Hospital, you’ll see examples of how donors are making a difference for kids. If you ever have the pleasure of watching one of Riley’s Child Life Specialists work their magic with kids, you’ll understand just how critical these donor-supported services are.

Today, we introduce you to one member of Riley’s amazing Child Life team, Abigail Rainey, who has joined her sister in following their Riley roots into rewarding careers.

Q: Tell us about your personal background and how it influenced your decision to pursue a career in medicine?

My sisters and I at home, after receiving care in the Riley NICU as newborn quadruplets

A: I am a quadruplet, and when my sisters and I were born, we spent a lot of time in the NICU at Riley Hospital. Riley is part of my story, and that is something I am proud of.

I never dreamed that I would be working here at Riley. Growing up, it always held a special place in my heart, but it wasn’t until I learned more about Child Life that I thought it would be a possibility to work here. Riley at IU Health gives back a lot to the community, and I am honored to be giving back in a place that helped me get started in life.

Today, I work as a Child Life Specialist in the Pediatric Intensive Care Unit at Riley Hospital. I work to meet the emotional, social, and developmental needs of the patients I see. I help kids understand and cope with their hospitalization. I help prepare children for procedures, learn about their diagnosis and play while they are here at Riley. I also work to help support siblings and friends of patients impacted by their hospitalization.

Q: What excites you about your work, and what are the goals that motivate you?

A: I love that there are new opportunities to help kids every day. One thing that I find most meaningful about my work is when a child can find success or a small “victory” while they are here. It could be holding still for an IV, shouting “I did it!” after having a procedure done, or creating something through play that allows them to express themselves. I love having the chance to empower children while they are in the hospital.

Q: What do you wish more people knew about Riley’s Child Life Specialists?

A: Evidence-based practice states that most children who are prepared for medical procedures (or hospitalization when possible) have lower levels of fear and anxiety compared to children who are not prepared. We can help give them the tools they need to cope while they are here at Riley, and promote future coping and adjustment to other medical challenges as well.

Q: Is there a memorable career moment you’d like to share that let you know you were making a difference?

A: A patient I worked with was having a really hard time taking his oral medications. After my assessment, I learned that he didn’t fully understand why he needed the medicine, or that it was going to help his pain go away just like his medicine did through his IV. I used what he already knew about the medicine through his IV to help educate him about the different kind of medicine he would be taking.  He was able to verbalize what would happen if the medicine was not taken, and how it would help his body. He also confided in me that he was unable to swallow pills, something he had been embarrassed to tell anyone, so I helped him practice.

Before he left the PICU, he was growing in confidence swallowing pills and was able to take the medicine he needed. It was good to know I had helped him not only understand what was helping him get better, but also set him up with the tools to have success outside of the hospital. He was so proud of what he had accomplished while he was in the hospital.

Q: What message do you have for all the people in the community who raise funds and make gifts in support of Riley Hospital?

A: Thank you to anyone who has ever raised funds or made gifts to Riley Hospital for Children. Your generosity and kindness help make this hospital the best place for children to get the help they deserve.

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“Riley is an amazing place…because of you.” A Heartfelt Heart of Riley Thank You

Child Life Specialist Angela Brennecke with Maya Shah, Elkhart, Ind.

Once again, the people who work at Riley Hospital for Children at IU Health have done something extraordinary to show just how deeply they care about serving children and families.

The Heart of Riley Employee Giving Program, organized through Riley Children’s Foundation, offers Riley team members the chance to make financial gifts in support of Riley programs. With four days left until this year’s campaign closes on Monday, June 30, around 900 team members have made gifts, bringing us close to our goal of 1,250 contributors.

Today, we’d like to share this thank you letter from former Riley nurse and Riley parent Amy Shah, whose daughter Maya appeared in this year’s Heart of Riley posters:

To all of the contributors to the “Heart of Riley” Employee Giving Program, thank you.

The Shah family during their daughter Sydney's journey at Riley Hospital

Riley is an amazing place, not just because of the standards of care that it provides for the patients and families, but also because of you.

It’s because of you that the medical needs of your patients and families get taken care of, and the emotional needs as well. I am so proud to have been an employee of Riley. I am confident when I recommend Riley Hospital to anyone in need.

Thank you for supporting me while I was in the Riley NICU as a mama holding on tightly to my baby girl during her beautiful, short life.

Amy and Sydney Shah

Thank you for continuing to support the many, many other families who walk through those doors.

But most importantly, thank you for supporting each other.

With gratitude,

Amy Shah

 

 

If you work on the Riley Hospital campus and would like to make a gift through Heart of Riley, please click here, or speak with the Heart of Riley committee member in your unit. This year’s campaign ends Monday, June 30.

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“I don’t want this year to end.” A Riley Champion’s Hope-Filled Journey

When our son Carter was nominated and selected as a 2014 Riley Champion, it was quite the honor. We were prepared for a year full of fun and opportunities that only come once in a lifetime. Carter was featured center court at a Pacer’s game, served as a coin toss kid at a Colts game, and most recently presented a red wagon to Justice Loretta Rush, the inaugural Riley Champion for Children recipient.

At the reception for Justice Rush, Carter said to me “I don’t want this year to end.” He is enjoying telling his story to hundreds of people, giving them hope, and making friends along the way.

This year has given us more than just fun. It has given us an extension to our family. The other Riley Families and advocates have been by our side for the entire ride.

Carter's PUDM Alumni friends cheer him on at a ballgame

Carter is currently on a travel baseball team which keeps us more than busy. His team traveled to Carmel a few weekends ago, and much to his surprise, he had his very own cheering section with signs and all. It was Purdue University Dance Marathon Alumni. They came out to support Carter and wish him a happy 10th birthday.

Carter gets support from fellow Riley Champion Dylan Shumaker from Bremen, Ind.

Last weekend Carter’s team had a weekend long tournament in Warsaw, Ind. A fellow Riley Champion, Dylan Shumaker, made the trip to see Carter play. It meant a lot to us that he took the time out of his busy schedule to support Carter in one of the things he takes most pride in: BASEBALL. Carter had one of his best games that day with Dylan in the stands cheering him on.

The friends we have made during this journey are irreplaceable.

As the author Anais Nin said, “Each friend represents a world in us, a world not born until they arrive, and it is only by this meeting that a new world is born.”

Our worlds are multiplying rapidly and we couldn’t fee more blessed.

To nominate a child (between 8-18 years of age) for the Riley Champions presented by Kroger program, click here. Nominations for the 2015 Champions are being accepted through August 1.

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“It gave me goose bumps”: The Curran Family’s Miracle Ride Story

AMBASSADORS FOR MIRACLE RIDE

On June 1, our family served as an ambassador family for the 21st annual Miracle Ride for Riley. This means that we were selected to tell our story, along with the Kendricks family, in front of 4,200 bikers and their passengers. When I looked out from the stage during the pre-ride program at Allison Transmission, I saw motorcycles lined up with no end in sight!

Since my husband is a biker, we decided to try a group fundraising effort called Team Ethan. We were able to raise almost $6,000 for Riley, with 63 registered riders! My employer, Interactive Intelligence, also generously donated $5,000. Ethan has been adopted as the Finance Department Miracle Baby!

Jason, Stephanie and Ethan Curran with Gov. Mike Pence at the 2014 Miracle Ride

VIP “SELFIES”

Before the ride started, Jason shared Ethan’s NICU journey and promoted Miracle Ride during several news interviews. Once everyone arrived, Tom Griswold of the Bob and Tom Show introduced our families, and he decided to take “selfies” with us. Once Governor Mike Pence arrived, Tom suggested he do the same, so we now have “selfies” with the Governor!

GOOSE BUMPS

Riley Hospital families wave to Miracle Ride participants

When it was time to take off, my older son Logan rode the motorcycle with his dad in the VIP section up front, and I followed behind in a car with Ethan and our parents. It gave me goose bumps when all of those bikes started their engines! We waved at the families in front of Riley Hospital, made a trip around the Indianapolis Motor Speedway and ended at Lucas Oil Raceway Park. There were people sitting outside on sidewalks just to watch this HUGE procession of motorcycles go by!

HEARTWARMING GENEROSITY
We have decided to join the Miracle Ride Committee permanently, as we have discovered it’s a great way for our family to give back to Riley for saving our Ethan. It was so heartwarming to be surrounded by people that just want to help the kids. Some were donating more than the required fee at the gate; another person approached me with a $20 donation before the start of the ride.

It’s amazing how generous people are when it comes to the children at Riley Hospital. Miracle Ride raised more than $300,000 for Riley this year. To everyone who participated or donated, thank you. We are looking forward to doing it all again next year!

To see more photos from 2014 Miracle Ride, click here.

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Meet Indiana’s New CMN Champion: “We are very excited and honored.”

Riley Lesh at the ceremony celebrating her selection as Indiana Children's Miracle Network Champion

We are very excited and honored that our daughter Riley has been selected as the 2014 Children’s Miracle Network Champion for Indiana. We have come to know so many families in our 12 years as a Riley family, and it means so much to know that Riley will be representing them in spirit throughout the year.

Dance Marathon Journey

Riley was about 3 years old when we first started searching for a way to give back to the hospital that had given so much to us. We got in touch with Riley Children’s Foundation and asked how we could help.
We attended our first dance marathon in the spring of 2006. I had no idea the impact that it would have on our lives. It was at Bloomington South High School and Riley had just turned 4 years old. I thought, at the time, that I had healed from the experience of her premature birth. However, as I shared her story on stage that first time, I realized that was not the case. Each hug or comment after the speech did so much to bring comfort to me. I watched her play with the high school and college students who had given freely of their time, energy and resources to raise money for kids they had never met.

Riley at IU Dance Marathon

DM Milestones and Memories

And now, here we are eight years and 139 dance marathons later. The Riley dance marathon program in Indiana has grown so much since we first started. We were there when both IU and Purdue broke the million dollar mark, and when Bloomington South topped $100,000. We saw Avon High School make national news this year with their dance marathon lip dub. We have watched new schools come on board with exciting ideas and a passion to help others.

Most importantly, we have watched as dance marathon became a family. The college marathons are like a family reunion when all of the alumni and other Riley families get together.

From Little Girl to Advocate

It has been so much fun to watch my daughter Riley grow right along with the program.  I think we were at Carmel High School in 2011 when she decided it was time to give her own speech. She also started asking if she could go canning with the students at special events to help raise money. She went from a little girl who needed to be entertained to a young lady who wanted to help.

Then last year, she decided that it was time for her to start learning the other side of dance marathon so that by the time she gets to high school, she’ll be ready to start her own. She signed up as a dancer at seven different college marathons (IU, Purdue, UIndy, Butler, Depauw, IUPUI, and Ball State) and by canning, selling loom bracelets and through online fundraising, she raised a little more than $2,000 for the kids. She has yet to decide which college she will call home in 2020, but you can bet that their dance marathon program will play a large part in her choice.

Gratitude Inspires Passion

We owe Riley’s life to her medical team. We know without a doubt that without their care and dedication, our outcome could have been far different. And we also know that without extra donor funding for research, education and hospital services, Riley and kids all across Indiana would not be given the healthcare that they deserve.

That’s why we’re so passionate about dance marathons for Riley Hospital. They are a way for us to join with students from all kinds of interests and backgrounds to raise money, educate others and help sick kids and their families.

We can’t wait for our new CMN Champion to share her story with even more people, and tell them how grateful we are to Riley Hospital for Children.

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