Another Hero Nomination for#CCHSDay2020 comes from all of us at The CCHS Network.
We are nominating our first celebrity embassadors @jonahhill and Henry Winkler for all that they do for the CCHS community! Because CCHS is such a rare disease, their voices make a world of difference for raising awareness and shedding light on our cause. CCHS Day 2019’s PSA starring Jonah and Henry along with Teddy Fox brought more awareness and donations then ever before. Many thanks to Jonah and Henry for your continued support, we couldn’t do it without you!
We have been so blessed with family and friends that support our journey with Charlie through CCHS. Charlie’s Aunt Bree has especially gone above and beyond and has worked to learn his daily care whenever she can visit. Even if it’s for one day she changes his trach and practices all of her skills. There is never a test or procedure that she doesn’t send a new book or gift of love. She has donated endless dollars every time we fund-raise. We will never be able to thank her enough for the love she shows our twins. She is our CCHS hero!
Our CCHS hero is Teddy’s grandma, Barbara. She has gone above and beyond for Teddy (and our entire family!) in every way possible. She makes every single day a little easier and much brighter for all of us. Barbara spent countless hours in the hospital to learn how to care for Teddy’s health and has since been a rock for us all. Whether she is going to doctor’s appointments with Teddy or taking him to the beach or just stopping over to drop off homemade food, there is no smile bigger than when Teddy sees Grandma. With a passionate focus on Teddy’s social and physical development, she constantly teaches Teddy new skills and pushes us to broaden Teddy’s horizons. Especially in these difficult times, her love and light keep us moving forward.
My CCHS Hero is my long time nurse Elizabeth Merino. She started being my nurse when I was 8 years old and stayed with me ever since. That is over 25 year now! She knows pretty much everything about me and my vent. She is willing to pack it up with all of my supplies and go great places with me anytime. With her around I have been to sleep away camp, Hershey PA, Utah, Atlantic City, and even Ireland! When I went to college she was one of my nurses that stayed with me in my dorm room at night. At home she made sure I was all taken cared of so that my family did not have to worry or do too many medical things when she was around. All of this is why she is my CCHS Hero!!
Mary Vanderlaan started the CCHS Network in 1989, following the diagnosis of her son. Her vision of patient empowerment through community and education has been the bedrock of our group. Coming together to form a coalition of companionship allowed CCHS families to validate their experiences and reduce some of the anxiety of living with an unknown, rare condition. We gained strength from connecting. As Candide Wakely fittingly states, “I could not have made it through this journey without Mary’s help along the way!” She is truly my hero!”. We, as a community, are grateful to Mary for her enduring commitment to CCHS.
I am nominating my oldest son Dalton because he was an amazing big brother to his little brother Noah when he was battling CCHS. Dalton was 5 when his brother was born and 8 when he passed. He lived in the PICU with his brother and I for 3 years. Now everyday he honors his brothers memory by living his best life. I’m so proud of him and Noah would be too.
Stephanie came into Skylah’s life as simply an occupational therapist. She was meant to be a phase. We had no clue that she would become so important in her life. Stephanie became her rock. She has visited Skylah in the hospital during tough times. She has stayed up at night researching with us what CCHS was and how it would effect our lives. She has brainstormed with us ways to help with accommodations. Stephanie has became her best friend. She’s came to every CCHS event. She’s learned in her own time exactly what needs to happen to help Skylah in any way she can. She has became our family. Stephanie has gone above and beyond and became such a hero in Skylah’s story.
Dr. Rimmer is amazing! She is my respirologist in Calgary who specializes in CCHS, and in the twelve years I have lived in Calgary, she has helped me fix so many CCHS related issues that I didn’t know I had (low blood pressure, bronchiocstasis). Every time I see her or e-mail her, she always takes the time to answer my questions, book me in
for tests if needed, and makes sure I am okay. I know she’s modestly say she is just doing her job, but to me, she has made a world of difference in my care.
Barbara has been Karleys nurse for 20 yrs. Barbara started working with Karley one week after Karley was discharged from the NICU when Karley was 3 months old. She is an outstanding nurse and has lovingly cared for Karley. Barbara battled breast cancer not long ago went through a mastectomy, radiation, chemo and reconstruction surgery was out for 1 yr and came back when she beat breast cancer so not only is she a CCHS hero but a Breast Cancer Survivor. Words cannot express how much she means to me, Karley and my entire family.
Natalia Alexandrovna Petrova is a doctor at V.A. Almazova in St. Petersburg, one of the best CCHS specialists in Russia. It was she who gave our son Zakhar a chance for a full life. Thanks to this doctor, we came from the provincial city of Saratov to St. Petersburg when Zakhar was 3 months old. In one month, Zakhar was transferred to non-invasive ventilation and discharged home! Dr. Natalia Petrova supervises a lot of children diagnosed with CCHS in the Russian Federation, and with her support we feel confident and protected. And we love her very much!!! Dr. Natalia Petrova also makes a great contribution to the dissemination of information about CCHS to the medical community in Russia.
These are all of Brooks’ brothers we are nominating. We are nominating them because their lives have been turned upside down in the last year and yet they have never complained but rather they have all learned to help with Brooks in their own way. They all adore Brooks and it’s been amazing watching them become the brothers to Brooks they have.
Our family is nominating is Tuesday Passmore, our daughter Alena’s night nurse, as our CCHS Hero! Tuesday works for Bayada Pediatrics and has been with us almost exclusively since Alena came home from the hospital… that’s 7 years! Rain, shine, sleet, hail, ice, snow, she shows up to care for Alena nightly! Whether it’s fighting the common cold, learning how to use Alena’s Avery diaphragmatic pacers, or sewing custom wraps to keep her pacer antennas in place, Tuesday has always risen to the challenge and has Alena’s best interest at heart. We can’t say enough about the positive impact she has had on our family!!
I nominate Mariela Collado as mine and Brandon’s CCHS Hero. She has provided an emotional and moral support for us like no other. She is giving and a nurturer, always tries to help us when we are in a jam. She was willing to learn about Brandon’s condition, learn how to use his equipment and even wanted to learn CPR. She created an environment where I would be able to trust that my son was being taken cared of while I (mom) was relaxing or just taking a break. I will forever be grateful and in her debt. I don’t know where I would be without her. She is my rock and Brandon’s as well. She is our Hero.
It was 1996-7 and a especially difficult year for Jimmy (age 6, 2nd grade). CCHS and Hirschsprungs threw us a half a dozen hospitalizations as well as a trip to Chicago for a week admit in the middle of winter. Margie Block was Jimmy’s second grade teacher that year. She was nothing short of a hero, amazing support and our sunshine. Jimmy had to miss what came to months of school. She would deliver weekly school packets for him, had students keep in touch nearly daily and personally came over 2-3 times a week to tutor and play with him. Jimmy was always just one of the kids in her class, even the king of the class during renaissance week. She encouraged his nurses to be part of the class and they were loved by all the kids. Because of her open and beyond flexible personality, he was never an outcast nor felt different.
I always said she was Mary Poppins in disguise, but here Cinderella and just as magical. To this day, she is my dearest friend and Jimmy’s “Mrs. Block, my favorite teacher ever.” Thank you Margie for never being afraid and encouraging us to have a just get it done and no fear attitude.
I’ve endured living with CCHS for 30 years. In those 30 years I’ve come to the conclusion that the stress CCHS places on a family has been the most damaging aspect of living with it. Finding reliable and consistent nursing has always and continues to be an ongoing struggle for families living with CCHS. My family dynamic was sabotaged by CCHS, but even with as bad as it was it would have been a lot worse if we hadn’t been blessed with the angel who came to us in the form of a woman named Stephanie Celentano. Stephanie was with us from the beginning and stayed with us until I no longer needed nursing at age 17. She had a family of her own but for 17 years she showed up to take care of me and mine 4-5 nights per week. She is in every way my second mother and played a huge rule in the development of my perpetual optimism through insurmountable odds against me. She is an unsung hero of my life and deserves the world or at minimum recognition of the sacrifices she made and the relief she gave my family.
I would like to nominate Andreas Larsson, he is the grandpa of a CCHS warrior. But that is not all. He is one of our greatest supporters. When Frans was born he quit his job to come work with Frans during nights. He has slept in the intensive care unit with Frans when us parents needed sleep. He has spent countless hours playing with Frans. He tries too make things possible for Frans despite health challenges. He is always there to support both Frans and the whole family. He is for sure on of Frans biggest heroes and we are beyond proud to call him grandpa.
Candy is Fisher Gene Watkins aunt. She is a registered nurse and is on the frontline all day long. When Fisher was born and in the NIC unit she was there EVERY DAY!! She loves Fisher like he is her own child.
Cristina is my little sister but has been my support since the day Angie was born, my right hand in researching and learning how to care for Angie.
She joined me at my first CCHS conference and we learn together how to be the best for Angie.
But best of all, an amazing tia, no matter how far we leave, Cris makes sure to never miss a holiday or a birthday, (cause she leave in Costa Rica) or a medical emergency.
I know I can always count on her to be by our side.
This is me and my big brother, Cole! He turned five shortly after I was born and instantly became a junior expert on CCHS. He had no problem instructing my nurses on what to do or educating strangers on the purpose of a trach. He coined the term “neck fluffies” from the sounds I could make with my stoma and always puts a positive spin on my differences. He is now thirteen and one of my most trusted caretakers. He carries an ambu bag so that I can explore the woods with our neighborhood friends and knows how to respond in an emergency. This summer I had a blue spell on the beach and without hesitating, he grabbed me out of my mom’s arms because he could get me to my vent faster. Cole has never been afraid of CCHS and therefore, I am not afraid of CCHS. That’s what heroes do…they encourage courage! #cchsheroes #cchsawareness
Dennis is Kaylen’s grandpa, or as she’ll come to call him papa. He has never failed to be there for not only Kaylen but mom and dad too. Kaylen loves getting to snuggle and talk to papa. Dennis has selflessly helped to make sure her room was ready for her arrival. He helped get a sidewalk laid out to make it easier to take her in and out of the house. We can’t count the times he’s come over to help before she came home from the hospital, to even now. He checks in on his girl daily, shows her off to everyone. He takes the time to learn all about CCHS, Hirschbrungs, trach cares, and even has baby sat!! We’d be so lost without this man in our life’s!
Dr Hugo Lagercrantz works at Karolinska, Stockholm Sweden, Institute as a researcher. His area is rare diseases, including CCHS, in children. Dr. Lagercrantz has written several books on childhood diseases. In Sweden, he has investigated several children for CCHS, including me.
Jared Wenberg is my little brother and we have 6 year difference in age. I was diagnosed late in life I was 10 and he was four he got me through. He distracted me and was there for all transitioning and hard times being on a ventilator 24/7 and are parents divorcing during being diagnosed. I focused on watching my brother grow and being apart of everything in his life. He made growing up as kid with CCHS easier he was always there for me no matter what. Still is there for me as caregiver, brother, and a friend.
We’re nominating Jess, who has been Emma’s main carer since she was discharged from hospital at 7 months old. Jess has always taken such good care of Emma and has allowed our family to live as normal a life as possible. She is a STAR.
Coming home to a small town was scary as far as medical care for our daughter is concerned, but we are so lucky to have an amazing pulmonologist in our small community. Dr. Jon Roberts has advocated for Luisa’s g tube removal when no one would listen to me. He also is super positive about her development when a neurologist here ignorantly told me that my daughter had brain damage. He has gone out of his way to connect me with another local family who has cchs. He is so available and supportive. He allows us to take initiative in my daughter’s progress. He is the only reason I feel comfortable keeping my daughter’s care in our small community.
She became Walker’s nurse when he was only 8 months old (4 months after he came home from NICU). She forever changed our lives. She loved him and our entire family like we were her own. She took such great care of him in every aspect. She is a beautiful person inside and out and we would like her to know how special she will always be to our family. We love you Reed, thank you for being YOU!
Leisha is not only a strong advocate for Fisher and the CCHS community but is a very important piece to the puzzle, support system for the entire family. Mimzy has been through the rough times, scary times, unknown times, no nurse times, sleep study times, happy times, milestone times…Fisher currently thrives with the help of Mimzy in his life!
Melanie is a CCHS superhero in so many ways. She is not just an aunt to Santino but a dedicated physical therapist at New York-Presbyterian. She has been Santino’s advocate and our source of hope from the moment Santino was born and diagnosed. She uses her time to research about CCHSand makes sure that we as a family, are on top of his condition. From every hospital admission down to a simple cold, no matter how busy and far away she is physically (she lives in new york, USA while we live in Vancouver, Canada) she makes sure that she is always there for whatever it is that we need- whether it’s a shoulder to cry on or just to be that person who never fails to listen to our struggles with CCHS. She is present and she is our treasure. Whether it’s CCHS day or just a normal day, she makes sure that she donates and supports whatever it is that is needed so that one day, Santino and all the other CCHS patients will have a cure.
The heroes we nominate are my parents (Harper’s Grandparents) they have been by my side since day 1 and after 5 beautiful years since Harper was blessed into our lives they have been their for us night and day everyday. I truly would be lost without my parents support and love. We love you guys and thank you for being our heroes everyday!
When our son, Brixton went into respiratory failure at 6 weeks old and admitted to the hospital, his Nana Nancy stepped up and was ready to help us with whatever we needed. She helped take care of our other children, volunteered to go through all the training to learn how to take care of Brixton and was simply there for us. Now that we’re home she is always asking how she can help, even if it’s something as simple as babysitting Brixton for us while we go to the store. She has been a Godsend to us during our journey with CCHS! We can’t express how much we love and appreciate her for everything she’s done and continues to do for our family!
Nathan is my oldest son, and Evan’s big brother. Nathan adores his younger brother and often writes about him or uses his brother’s condition as examples in his classes. He created a tree drawing to represent CCHS and designed his own football cleats with the CCHS Ribbon as well as the date Evan came home from the hospital. Nathan has expressed an interest in researching CCHS and working with individuals with CCHS. Nate challenges Evan to do more and take some chances…going tubing on the boat, skiing with the family, riding 4-wheelers. He also coaches him in Special Olympics and gets his friends to attend events to cheer on Evan.
He is my mutual BFF, my world, my role model, my partner-in-awesomeness, my class fellow, and last but certainly not least…MY CCHS SUPERHERO. He has been an inspiration to my parents and me. Since he is college professor in mathematics, he would be able his experience to assist me in mathematics homework. We enjoy going to the movies together and we love to go grocery shopping. For example, when we went to the movies for Rogue One: A Star Wars Story, he was fascinated by the graphics, lasers, and characters. He was surprised to see that I could understand the whole Star Wars saga. One of the coolest things that amazes me about my grandfather is that he has the ability to continue teaching.
As far as my diagnosis goes, we are blessed to have my grandfather help us. Whenever I was in hospital, my grandfather would do whatever it takes to make sure my family has plenty of food. In addition, they will help out my parents. If my parents were to travel to India, then my grandparents would always look after me.
My grandfather has known me since birth and I am so blessed to be his BIG grandson.