Since Ava’s birth in early August, we have spent the majority of every single day at her bedside in the hospital and its been exhausting, to say the least, both physically and mentally. Already we have experienced more ups and downs than we could have imagined but we are happy to say that Ava is currently in a great place right now and is finally making some progress towards possibly coming home as she is finally able to tolerate her feeds, which has been an issue for the past couple of weeks. With the Foundation’s help, we are actually able to celebrate this milestone instead of shifting our stress towards bills! We can not even begin to express how grateful we are for the Family Assistance Program.
The Mehta family has a beloved Intervener who has worked with Aman for the last 7 years. According to them, she has made an incredible impact on his ability to communicate, his success at school and his overall happiness. Here’s what Brenda has to say about her experience:
I’m an intervener for a young man with CHARGE Syndrome. As an intervener I play a vital role in the educational experience. It is extremely difficult to explain the relationship between intervenor and student to those unfamiliar with CHARGE. It’s so much more than enlarging print or providing tactile resources. I explain and re-teach what has been presented in the classroom. I make him aware of the details of his environment so that he may fully engage in it. Perhaps most importantly, I am this student’s staunchest advocate. Not only an advocate for his right to an equal and appropriate education but an education that meets his needs on his terms.
When Logan was diagnosed with CHARGE syndrome as an infant, his parents, Jenn and Richard Kile, were devastated and overwhelmed.” I remember that at one point I was just a heap on the floor, sobbing,” said Jenn. The NICU nurses quietly worried that Logan would be blind, deaf and mute. Because only one in 10,000 kids is diagnosed with CHARGE, most hospitals shuffle families from specialist to specialist, treating each condition in isolation. And that’s just how it went for Logan’s family. When Logan turned 7 years old, they really started to struggle.” We’d been through so many things that weren’t working. Logan would be sick for weeks at a time and unable to get off the couch. He was missing school, he wasn’t growing — it felt like everything was failing. And the cycle just kept repeating,” Jenn said. That’s when a friend suggested they contact Cincinnati Children’s, where the team takes a comprehensive approach to treatment. This is especially important with a complex genetic disorder like CHARGE. Jenn remembers the call from Lucy Marcheschi, the nurse coordinator for what is now the CHARGE Center, like it was yesterday. “When I talked to Lucy on the phone, she cried with me,” said Jenn. “That’s when I knew we had the right team and the right people.” Soon after the call, the Kiles traveled from their home near Columbus to Cincinnati for a series of surgeries that changed everything — suddenly Logan was growing and going to school and doing all these things he couldn’t do before.”
“When we were first starting this journey with Logan, I didn’t feel like we were connected to the right people soon enough,” said Jenn. “For us, there are so many things that have happened just by being connected to the right people.” “This isn’t as scary as it once seemed. Logan has led us. He runs the show. And I don’t let those other things worry me,” said Jenn.” There are days when you feel frustrated and you just think that this is too hard. And then there are days where my child says, ‘Mom’ for the first time and you realize that it’s all worth it. The awesome days definitely outweigh the tough days.”
Like most individuals with CHARGE, Kennedy had a rough start, with 20 surgeries, incalculable appointments and therapies, and a feeding tube for nine years. She overcame every obstacle and every challenge including becoming a total oral eater at age 9, graduating from high school with honors, cheerleading competitively, singing in choir, playing percussion, and performing in all four years of her high school musicals. In recent years, she has been a prolific volunteer here in our city: at a nursing home, at our local theatre, and for many large festivals and events, including the East Coast Music Awards. She has worked as a welcome agent for the cruise ship industry and she was hired to work as an election officer for our provincial election. We couldn’t be prouder!
Elizabeth was diagnosed with CHARGE syndrome shortly after being born and she has had many challenges, such as being tied down with a feeding tube and experiencing hearing difficulties. In spite of these challenges, Elizabeth has been involved in dance and theater for the last few years. Recently her feeding tube was removed and she got a BAHA implant. These advancements have left Elizabeth unencumbered and communicating more effectively.
In November 2019 Elizabeth was crowned Miss Kerr Lake Dream Angel! Her mother reports that she wasn’t even nervous! Watch Elizabeth give it her all here: https://drive.google.com/file/d/1iIWIyFEEcygAgtF_vcf8WTttbkJkEYwo/view
In the life of a person with CHARGE, siblings can be a source of support, inspiration and a best friend. To Nolan, Mallorie is all of these and more. From the very first moment of Nolan’s birth, Mallorie loved him fully and unconditionally. She was only 3 years old at the time, but she taught us so much about what acceptance and unconditional love truly is. Her dedication to him started from Day 1 and has never wavered. She has always pushed him to do more and be better. She started learning sign language as a young child because she wanted to make sure he could communicate. She’s now earning a minor in ASL at Central Michigan University. Nolan adores her! He looks up to her as a role model and loves being included in her social circle. They FaceTime regularly and communicate through their private siblings Snapchat group with their brother. His most favorite thing to do is spend time with her. In short, Mallorie makes Nolan’s life better.
Advocating for the people with CHARGE in our lives is something many of us do so frequently it comes as second nature and there’s nothing we love to see more than when it pays off! That’s exactly what’s happening for Parker, a middle schooler from New York. Parker is profoundly deaf with a cochlear implant, has no vision in his left eye, and two colobomas in his right eye. Because of this, he needs some extra time and support to access his environment. His family and state Deaf-Blind project helped to get him an intervener, which led him to being more attentive during class and has helped him engage with his peers! With the right support Parker has thrived, even with distance learning. His teacher recently said he is above grade level in math! Way to go Parker!!
The first six weeks of Jax’s life were characterized by weight loss and struggle. Born in Jamaica, his family felt helpless watching Jax struggle as they exhausted the medical resources available to them and still didn’t have any answers as to why Jax wasn’t healthy. After going to Miami for additional medical support, they finally got a diagnosis —CHARGE syndrome. They were told Jax would likely never be able to eat by mouth, walk, or learn. Now Jax is 3 years old, eating everything in sight, signing like crazy (including “I love you” for the first time recently!), walking independently, and doing all the happy kid things! Look at him go: https://drive.google.com/open…
Jax and his family have hurdled over so many obstacles — we can’t wait to see what Jax continues to accomplish!
A true inspiration, Cameron recently graduated from Central Michigan University with a double-major in Healthcare Administration and Psychology. He was a member of the CHARGE Syndrome research lab at CMU, along with numerous other extracurriculars. He’s currently working as a behavioral technician for a developmental disability psychiatric unit at Pontiac General Hospital in Michigan. And did we mention Cameron has CHARGE syndrome? He has overcome so many challenges and continues giving back to our community by inspiring us everyday!
A Safe Place to Sleep
15-year-old Danno Sikora has difficulty sleeping and tends to wander at night. He often engages in dangerous self-injurious behaviors while seeking sensory input. Does this sound familiar? It is a situation that many of our families face and it’s a struggle to find solutions. His mother, Melissa, had met with frustration trying to get an enclosed bed with soft sides covered by Danno’s insurance. After a long and fruitless battle, a friend of the family decided to try a Facebook fundraiser. They raised over $5,000 in 24 hours! Most of the donations came from people within their own community. Melissa’s entire family was touched that the community came together in such a loving way for Danno. All it took was someone with an idea and the courage to ask.
Lacey Suter, age 21, not only graduated last June from Crotched Mountain school in Greenfield, New Hampshire, she won the 2019 Principal’s Award! This is the highest award at her school. Lacey was recognized for her amazing perseverance in striving to better herself physically and socially. When presenting the award, her principal said, “Over the past few years Lacey has made a great deal of progress using her strength and balance to walk with less assistance. She can now utilize her walker to walk to a variety of places within the school and community.
In addition, she has increased her ability to use her communication device to express her wants and needs, to socialize and to make connections with others. When meeting new people at Opportunity Networks, Lacey independently activated her device to introduce herself. We are so proud of all that she has accomplished here at Crotched Mountain.” Her mother, Laurie Suter, was bursting with pride!!! She said that Lacey had never won anything before which meant the world to her. Another person with CHARGE demonstrating their amazing ability to overcome obstacles!
23-year-old Dylan has found a non-conventional communication system that works for him. It allows him to not only learn new concepts but to access higher-level cognition such as past, present, and future. By having his hand rest on mom’s, they draw very basic drawings. Kim Lauger is no artist, but in drawing with her, Dylan seems to gain so much more understanding and definitely has more control than he does with static picture symbols. Paper and markers can come out at any time they want to “have a chat”.
Tactile Drawing in Action:
An example (before Social Distancing) is Dylan seemed to be at the stage where he might enjoy clown humor. With a one-ring family circus coming to town, we thought he might be able to get close enough to actually see. We got tickets for the shorter morning show, drew circus stories to prepare, and headed out. But when we got there early we found we couldn’t go in and get settled into seats before the crowd arrived. Instead, the clown, Nino, was encouraging a crowd to gather before opening the tent. Dylan wanted none of it! He pulled away, growled, and otherwise indicated no thanks. Nino saw Dylan and tried to say hi, but Dylan was intent on leaving. We followed Dylan’s cue and walked down the block a little and found a place we could sit down away from the commotion. As soon as I pulled the paper and markers out, Dylan’s body relaxed and he placed his hand on mine, ready to “talk”.Together we drew a very basic circus tent with a circle in the middle to represent the ring on three different pages. On one page we put horses going around inside the ring with people standing on their backs, the next a trapeze bar with a person hanging upside down, and the third with a clown. Finishing the story, we walked back towards the crowd, standing at the back, thinking maybe we’d wait until everyone went in, and perhaps we would still find a spot where he could see. But no, Nino announced that anyone who needed extra help could come in first – Dylan pushed his way through the crowd and led us right up to Nino and on into the tent to a seat in the very front row. He watched the circus, that luckily happened to have just the acts I’d drawn, laughing and smiling so much, that Nino even asked if he wanted to come into the ring to help him. Dylan’s body pulled back indicating NO. (We drew Dylan watching from outside the ring, he was definitely not ready for going in.) At the end of the show, we left amongst the crowd, with Dylan stopping to shake hands and take a selfie with Nino. Through these spontaneous moments of drawing, we can then co-draw symbols for inclusion in his communication book, building his vocabulary based on his experiences. And the more we draw together, the more his overall communication and language skills continue to grow, with ASL continuing to emerge at Dylan’s pace.
The Take-Away: Find the communication system that works best for your child!
Bon Appetit, Josephine!
Josephine has been in feeding therapy for several years. It was always 1 step forward, 2 steps back. She never told us if she was hungry. She would put things in her mouth, but spit them out. Even when she got to the point when she would swallow, it was never self-initiated. Recently she decided that it’s a good time to start eating. She started asking us to eat multiple times a day and now sits with us for every meal and eats yogurt with us! It’s a milestone that I was unsure she would ever achieve and she did it all by herself. What a proud moment for our girl!
Help us give outstanding caregiver April Bieri a pat on the back!
April was first introduced to the CHARGE community through working with Jacob Hartshorne, a job she’s done for over ten years in addition to being a special education teacher. Spending so much time with Jacob throughout the years, April is an honorary member of the Hartshorne family. She’s attended multiple CHARGE conferences with Jacob, extending her support to numerous other families by donating her time off to help other individuals with CHARGE enjoy the conferences.
Thank you, April for being such a great supporter and an inspiration to us all!
Aman is 18. He was born in Victoria, British Columbia (Canada). He loves playing video games. Mario Kart is his favorite – and he beats everyone at it! His favorite character is Morty in Luigi Mansion. Morty is a ghost director. Aman loves water-based activities including swimming in the lake, pool, etc. He loves spending time on the boat. He calls his lakeside home Camp Mehtawood, inspired his favorite summer camp – Easter Seals Camp Merrywood in Ontario, Canada. Aman has a great sense of humor. He loves his younger siblings – his brother Anmol and sister Rynah!
Noah’s dream is to become an actor. He is passionate about writing plays and using his artistic abilities to create characters. His mother suggested that he become involved with community theater so he auditioned and landed his very first role – as the police officer in the stage version of Junie B Jones is Not a Crook! The cast delivered five performances.
Given all of Noah’s experience as a YouTuber, he wasn’t nervous at all. Check out Noah’s YouTube channel.
