The Importance of #ChildrensHospitalsWeek
Just the other night, CMNH went live on Facebook with their fundraiser, broadcasted from Walt Disney World; it featured Miracle Kids from across the U.S. and Canada and appearances from surprise celebrity guests. In case you missed it, you can watch the steam below:
But advocates for CMNH were asked to participate in #ChildrensHospitalsWeek in multiple way. One way people could have shown their support for children’s hospitals was by wearing a bandage of their choice, taking a photo, and sharing it with the #ChildrensHospitalsWeek hashtag. Another thing I did this week to support was to also order my own premium Miracle Band! If you already have not, be sure to order yours! And #ChildrensMiracleWeek is also about sharing stories of success and determination. We asked for readers to submit their experiences with a local Children’ Miracle Hospital and the stories were beautiful.
Nikkee Fleming wrote to us about her daughter, Monroe, who is a palmetto princess from Miss Summerville. Fleming wrote that, “Monroe was born at MUSC (South Carolina), where they have done extensive procedures to prolong her life.” She continued, “(Monroe) was trach and g-tube dependent. She’s now a thriving happy independent 7 year old.”
“(When) Monroe was born, she was in the NICU for 2 weeks and then returned to their PICU at 8 weeks old due to respiratory distress secondary to her genetic condition called Escobar syndrome,” Fleming shared. At this point, Monroe was the first and only child MUSC has seen with this rare condition. She went onto say, “Monroe has been a patient at this hospital multiple times over her 7 years of life and they have always treated her like a princess. All the nurses loved taking care of her and loved seeing her every day. She has seen several specialists including, ENT, pulmonolgy, GI, genetics and all of her physical, occupational and speech therapy services from MUSC.“
Fleming went onto share with us that when, “Monroe was 8 weeks old she was unable to breathe due to vocal chord paralysis. It was decided at this time she would need a tracheostomy. MUSC performed this procedure along with all the training so we could take Monroe home. The physicians and nurses made sure we felt confident and comfortable taking care of her at home. Eventually Monroe had reconstructive airway surgery and was able to have her reach removed when she was 3 years old.”
But having this procedure never dimmed the light for Monroe; it i because of the amazing hospital staff at MUSC that she is a “able to live her life to the fullest today,” her mom says. “She loves being a part of the Miss South Carolina as a Palmetto Princess for Miss Summerville. She loves volunteering and giving back to those who are struggling like she has. She loves CMNH and has worked to raise awareness and gather donations for this cause. If it wasn’t for this amazing hospital she could very well not be here participating in this amazing organization and we could never repay this hospital for all they have done for Monroe.”
Carly Fisher is the reigning Miss Massachusetts’ Outstanding Teen. Her mom wrote into us and said, “on the night before she turned 14, we rushed Carly to a local hospital because her doctor suspected she was experiencing appendicitis. We were at Morton in Taunton, MA, when we were told she would need surgery. A short time later the ER staff came in to tell us they couldn’t operate on her because they didn’t have a pediatrician on call to take care of her post-op. She would have to be transported via ambulance to another hospital. They didn’t want us to drive her in case her appendix burst while we were on our way. Without hesitation, I told the ER staff we wanted to go to Boston Children’s Hospital.”
Boston Children’s Hospital states on their website, “Every year, more than 600,000 kids and their parents come to Boston Children’s Hospital. And we are determined to do everything possible — and sometimes the seemingly impossible — to help them get well.”
And that is what happened in Carly’s situation; Her mom continued, “Carly was taken into the operating room at about 2am on July 9, 2015 – it was her 14th birthday. She was out and resting comfortably in a room just a few hours later. A short time later the staff there came in with a huge bouquet of birthday balloons and a basket filled with goodies for her.”
And Carly never forgot how great Boston Children’s Hospital was to her; she was named as the National Miracle Maker this year at the Miss America’s Outstanding Teen Pageant, raising $21,000 for Boston Children’s. “She knows that having your appendix out is pretty minor and routine compared to what most of the kids there are going through,” her mom continued, “but she was impressed with the care and kindness she received during our short, whirlwind visit.”
Isabella Freund, who is Miss Shores’ Outstanding Teen 2018, also wanted to share with us about her brother’s experience. She wrote into us and said, “Antonio was born with a congenital heart defect called Hypoplastic Left Heart Syndrome. This heart defect basically means that the left side of his heart did not develop. He was born at University of Penn, then quickly transferred to Children’s Hospital of Philadelphia. He needed a three-step surgery, and the first surgery was when he was four days old.”
Pictured here is Isabella Freund with her brother, during a visit to CHOP
Isabella continued, “after the surgery, he stayed at CHOP for three weeks. He then returned when he was six months, then 2 years old. The surgery transferred everything to the right side of the heart, so now the right side does both the right and left side functions.”
Isabella also went onto state, “The doctors at CHOP have been so important to my brother’s care. Dr. Thomas Spray was Antonio’s surgeon for all three open heart surgeries. Dr. Jack Rychik, his cardiologist is the doctor that diagnosed Antonio even before he was born. This allowed Antonio to be delivered near CHOP and quickly started is life-saving treatment. Antonio continues to follow with Dr. Rychik twice year at CHOP for check-ups. Dr. Rychik continues to be inspiration and I hope to be a Pediatric Cardiologist. Not only are the doctors exceptional at CHOP, but the entire team including nurses and social workers. They helped my family deal with a life-threatening illness and provided the best care.”
Pictured here is Antonio with his cardiologist
“CHOP also allows my brother to be enrolled in many programs including the Survivorship Program which closely follows children with HLHS. The program monitors for problems that may come up due to his surgery. Antonio is also enrolled in many ongoing studies the help study his heart condition to help find new treatments for future patients,” Isabella said. “Without CHOP my brother would not be here today. It is because of CHOP, my brother loves all sports and full of life. My family continues to grateful for CHOP and all that is has does and continues to do!”
Lastly, we share with you one more personal story from Tori Kalisz, Miss New Bedford’s Outstanding Teen! Tori was diagnosed with Ehlers-Danlos, which is a connective tissue disorder, which impacts all her joints. Tori wrote to us and said, “Throughout the past two and a half years, I have dealt with my own struggles that were overseen by Boston Children’s Hospital- which happens to be a CMN hospital! In November of 2015, while anxiously awaiting an audition for America’s Got Talent, a hug from a friend sent my shoulder straight out of its socket. This “injury,” along with other joint problems, led me to the diagnosis of a rare connective tissue disorder and embarked me on a six-month journey of endless shoulder dislocations, emergency room visits, and hospitalizations I would have never imagined. I spent those most difficult months of my life in a large immobilizer brace (“gunslinger brace”) that was so rare- practically no one had seen anything like it before.”
In this picture, Tori was admitted to the hospital in December 2015 (for a week before Christmas), at Boston Children’s Hospital.
Tori went onto state, “My life was no longer what it used to be. I was no longer able to dance or do many things with my friends that I loved, and, even when I performed as a vocalist, the thought of being on stage in front of so many people with such a strange, uncommon brace was frightening and even embarrassing. It took me a long time, but I eventually made the decision that this disorder was not going to stop me from doing the things I loved. I wore that huge brace to perform, forced myself to do painful physical and occupational therapy, and worked extremely hard to make up my missed school work so that I could graduate.”
In this image, you can see Tori is wearing her brace that she was in for 6 months and still volunteered and performed at a Tunes for Tots fundraising event.
“Today, I have full use of my arm and shoulder, but deal with other joint and pain issues every day. There are still some days that I am not able to dance, and there are still some things I wish I could do, but can’t. Some days are worse than others, but I have realized that when going through challenges, big or small, we have a choice- to give up, or to rise up. I choose to rise up,” Tori said.
She ended with, “Two years ago, I would never have believed that I was strong enough to get through this, but I am, and I now know that others can overcome great challenges too. When I came out of the brace, I was practically paralyzed and needed to relearn how to us my entire left arm again. Without my team at Boston Children’s Hospital, I wouldn’t be able to be where I am today. Throughout the past two and a half years, I’ve learned that we all have a story; this just happens to be part of mine. Because of my journey, I know firsthand just how important funds for children’s hospitals are, and I am very proud to be raising money for CMN and Boston Children’s Hospital with the Miss America’s Outstanding Teen Organization.”
As you can see Children’s Miracle Network Hospitals are so much more than a caring facility to admit your child. Their website has enough statistics to share:
Read more – https://childrensmiraclenetworkhospitals.org/about-us/
Hundreds and thousands of children are treated at a CMN Hospital and there might even be one in your neighborhood. 62 Children enter a CMN Hospital every minute. 1 in 10 Children in North America are treated by a CMN Hospital each year. And 32 MILLION patients visits are provided for 10 million kids every year by CMN Hospitals. And one of those children can be living right next to you. The next time you see a donation set-up for CMNH, please don’t walk right past it. Every donation counts and each donation added up, impacts a child who is admitted at a local CMN Hospital. Your prior donations helped people such as Carly, Tori and Isabella’s brother; and your future donations can do so much more. You can even find your local CMN Hopital and donate to them directly!
