Children’s Miracle Network Miracle Kids

My son Max is 8 and has high functioning autism, sensory processing disorder, and is socially and emotionally delayed. He was diagnosed in April/May of 2019.

We first saw red flags before he started preschool. When we met with his teachers, we shared our concerns, but we all collectively thought it was because Max is an only child and hasn’t been around many other children his age. We thought that eventually he’d grow out of the issues we saw. As school went on, we saw there were no changes, and in fact, the issues got worse. It was causing havoc within our home life and school life as well. Max’s teachers saw it too.

I went to his primary doctor with our concerns for possible ADHD, but he recommended we see a physician that specialized in these types of behaviors. That’s how we found the Center for Exceptional Families.

At CEF, we met the fabulous and amazing Dr. Susan Youngs. She sat on the floor and interacted with Max during numerous appointments while we tried to figure out what was going on with our son. She told us she saw the red flags and concerns for autism. She said with the spectrum being so large that there were various symptoms that could fall under the diagnosis, but most importantly, she could see what we were seeing. From that point, Dr. Youngs set us up for regular visits with her along with visits to a child psychologist and nutritionist at CEF. They evaluated Max on several occasions to be sure to get a full picture of his symptoms. After his last evaluation they officially diagnosed him with high functioning autism, social and emotional delays and sensory processing disorder. Immediately after his diagnosis, Dr. Youngs gave us a treatment plan and her recommendations for what Max needed based on the team’s observations.

Max participates in Applied Behavior Analysis (ABA), speech therapy and occupational therapy to help him with his challenges. These include sharing, conversation skills, self-regulating emotions, recognizing and reacting to other’s emotions, fine motor skills, higher critical thinking and adapting to change. Things such as these can make every day a struggle and can cause a meltdown for him in his world. We also participate in parent training to help us understand what he’s learning and how we can help.

Since Max has been in therapy, he has overcome so many challenges. His conversation skills are much better, and he can console others when they’re having a hard time. He’s starting to be a little more open minded to change and we’ve been able to decrease his sessions since he’s reaching so many goals and targets. To see Max thriving in areas he once struggled, warms my heart. Max recently started karate to help with focusing and self-discipline and he loves it!

If not for Dr. Youngs, we would still be struggling to figure this out. We owe it all to her and her colleagues for helping us and seeing what we saw. We’ve had our share of people that called us crazy and told us Max was just “spoiled”. Dr. Youngs took the time to see him and understand him. She is truly an amazing physician and I am forever grateful to have been referred to her.

Hi, my name is Holly Soper and I would like to start by thanking everyone for participating today and taking time away from your busy schedules, to help support this amazing fundraiser. I know these days, our lives can be chaotic and very busy. So, we appreciate everyone here.

Also, a special thanks goes out to RE/MAX Nexus along with everyone else that helped put on such a wonderful event. Last year, they raise $40,000 at this event. That money goes directly to scholarships for local children to attend the RE/MAX Communication Preschool at Beaumont Children’s in Royal Oak for an entire year. The money raised will fund nearly 13 scholarships. Scholarships for children who struggle to communicate and often have multiple medical issues. Being able to articulate how they are feeling, what they are feeling and being heard and understood means more than anything to them and their families.

This preschool is not your typical school for 3 to 6 years old’s because it only accepts students who have been diagnosed with moderate to severe speech or language impairments. This preschool is amazing because they have a speech and occupational therapists in class to assist the teacher. Also, the teacher, Mrs. Beth, is one of the most kind hearted and patient person you will ever meet. Mrs. Beth loves these children and works so hard with each student to help improve their communication. Mrs. Beth and the specialized therapist at this preschool are amazing and they have all helped my daughter more than I could ever imagine. This is why many parents travel between 30 to 50 minutes to come to this specialize speech school.

This is an incredible school and I would like to share my daughter’s story with you today, just to give you the perspective of some of the children that go to this school. My daughter Everly is 5 years old and has been going to this awesome preschool for the last 18 months. Everly is one of the students who will benefit from the money raised today. So, I just wanted to thank everyone for participating today.

Everly has had a difficult childhood with many heartbreaking moments. The first of which came when Everly 18 months because she was diagnosed with moderate to severe speech delay. At the time, we knew Everly was behind on her speech milestones but everyone was telling us just to be patient because her speech will come along. Nevertheless, we didn’t want to delay Everly’s care, so we enrolled her in group speech therapy classes when she was 18 months. After a few months of group speech therapy, we noticed that other students were progressing faster than Everly. So, we enrolled her in private speech therapy to help her make more progress with her speech.

At 2 years old, Everly was going to group speech therapy once a week in addition to private speech therapy twice a week. With Everly going to speech 3x a week, we began to start seeing her make some progress with her speech. However, Everly’s speech therapist kept telling us that she has low muscle tone in her mouth which was contributing to her speech difficulties. Her speech therapist explained to us that this was making it difficult for her to fully articulating the words she was trying to pronounce. Around that same time, we realized that Everly was walking a little unusual. So, we decided to take her to get evaluated by the physical medicine doctor to help explain Everly’s low muscle tone and the way she walked.

This is when we had our next heartbreaking moment in Everly’s childhood because we were expecting the physical medicine doctor to tell us nothing is wrong with her. However, to our shock, the physical medicine doctor pre-diagnosed her with cerebral palsy but ordered an MRI of her brain to see if she had any brain damage.

When we got the results back from the MRI, it did not show any noticeable brain damage, which we were happy to hear. However, the physical medicine doctor wanted to get a more detailed MRI of Everly’s brain and spine because he thought that there could be a syrinx in Everly’s spinal cord, which could be contributing to Everly’s low muscle tone symptoms. Unfortunately, this was in March 2020 and that is when everything got shutdown because of covid. This was a very stressful time for us because not only were we dealing with the unfolding pandemic, we were also patiently waiting for the hospital to schedule her second MRI which took an extra two months to get the MRI scheduled.

After a very long two months, we were finally able to schedule Everly’s second MRI. That MRI revealed that Everly had Chiari malformation and syringomyelia. The neurosurgeon recommended decompression brain surgery to help relieve some pressure in Everly’s brain because it could help improve her symptoms of low muscle tone (in her mouth and body) in addition to potentially preventing further neurological damage. The surgery was a success, but the recovery was tough. Everly had to spend 2 days in the ICU and another 4 days in the hospital.

Everly’s speech did improve shortly after surgery, but we noticed that she was still having difficulties speaking. That is when her speech therapist diagnosed her with apraxia of speech, which is when the brain struggles to develop plans for speech movement. Everly can hear the difference between words and thinks she is pronouncing the words correctly when she tries to say them. However, the words do not always come out right because Everly’s brain has difficulty coordinating the proper muscle movements to say different words. It was heartbreaking to learn that Everly had apraxia of speech because that is when I realized that this will be a life long struggle for her. There is no cure for apraxia of speech, the only treatment available for this is intensive speech therapy.

Around that time, I heard about this special speech preschool in Royal Oak that came highly recommend from two high school friends, Jacob Thompson and Meg Simns. Jacob Thompson knew about the preschool because he is part of Remax First and has done charitable events for the preschool before. Meg Simns had taken her son to the preschool and had nothing but positive experience with everyone involved with the preschool. After that, we got Everly evaluated to see if she would be a good student for the school and we were very excited when she got accepted. When Everly started at the preschool, her vocabulary included around 150 words – compared to a typical 3 year old that should be using around 250 to 500 words.

Everly has made amazing progress since starting at this school and loves seeing her new friends every school day. Everly has been going to this preschool for about 18 months and is now commonly using 5 to 6 word sentences. Everly’s pronunciation has also improved and she talks more clearly now. Everly has also found new ways to explain to us what she is trying to say instead of just repeating the same word over and over if we are having trouble understanding her.

Everly has a very busy schedule for a 5 year old, she attends this preschool 2 days a week in addition to attending kindergarten on the other 3 days a week and also private speech therapy twice a week. After Everly was diagnose with apraxia of speech, we purchased an AAC communication device which is an iPad that is customize to help Everly communicate. So, instead of other kids only having to worry about speaking verbally, Everly also has to learn how to navigate her AAC device in addition to trying to speak verbally.

There are a lot of heart-breaking moments that come along with having a child with a speech disability. Knowing that Everly doesn’t have a normal childhood like the other kids who could be off on play dates or at the park. Instead, Everly is busy going from one therapy session to the next or at other doctor appointment to get another evaluation. Another heart-breaking moment is when Everly gets really upset and says while crying “Why you no understand me”, which just breaks my heart.

Hearing other children her age being able to speak in full sentences while Everly struggles to pronounce certain words is very tough as a parent. The worst part is knowing that Everly knows that she is different and not like other children. I also worry about that her speech will never get to where it needs to be and she will have to continue to go to speech therapy or use her communication device as an adult. Then, I worry about, how will this affect her self-esteem or impact her ability to have a successful life and if this could hold her back from getting a powerful position at a great business. Also, I worry about other children and adults treating Everly different because of her speech disability because this is not her fault, and that just breaks my heart.

Everly is such a strong, intelligent, and determined little-fighter who is a force to be reckon with. She loves to learn, to joke, and do gymnastics. And boy does she know what she wants and won’t ever back down. I hope that she will always have these qualities as an adult.

Everly has taught us so much. One, being different is an amazing thing, which has taken us on a different journey than most. She has taught us to always be kind, understanding, and patient with others. She has taught us to be appreciative of the little things, like when she says “love you ma”. She has taught us to be tough, fight for what is right and what we believe in for ourselves and others who aren’t able to do it for themselves.

And one of the most important is acceptance. Accepting the things that are out of our control. Accepting others for who they are and try to learn from their struggles instead of judging. And to never give up and always fight for what you want. I also hope that one day Everly will realize how far she has come and how much she has accomplished and how much hard work she has done.

And with that, I leave you with this. “Helping one person may not change the world, but it could change the world for one person.”

You have no idea how much everyone here helped with changing the life of all the children that go to this preschool. So, thank you.

In September 2019, 10-year-old Connor fell while battling for a ball during a soccer scrimmage. His parents took him to see an orthopedic surgeon, who performed an X-ray to confirm that Connor had broken his collar bone.

Eight weeks and many follow-up appointments later, Connor’s collar bone was healed. But something wasn’t right. His head and neck were still out of alignment. The orthopedic surgeon referred Connor to a physical therapist, where he underwent treatment for six weeks before a therapist noticed something amiss with Connor’s neck during a manipulation session. He was referred to a neurologist for a CT scan. When the neurologist saw the imaging, he urged Connor’s family to take him directly to the Emergency Center at Corewell Health William Beaumont University Hospital (formerly Beaumont Hospital, Royal Oak).

Reviewing the CT scan with Connor and his family, the physicians pointed out two twisted vertebrae in his neck. They were shocked Connor had not experienced paralysis, muscle weakness or any other neurological symptoms. The following morning, Connor had surgery to install a halo device to stabilize his neck. His family was told he would be in traction for about a week. But that one week quickly became eight.

Connor remained hospitalized for two months, unable to sit up or get out of bed. He underwent three additional surgeries and countless painful traction adjustments to his halo. Despite these extraordinary circumstances, Connor maintained a positive attitude throughout his stay. “Connor has the sweetest soul of any patient I’ve ever worked with,” said Child Life Specialist Amanda Lefkof. “He put a smile on everyone’s face.”

Connor availed himself of every Child Life Service that was offered to him over the course of his stay. This important program, funded by Children’s Miracle Network, is dedicated to helping children and their families cope with the stress of serious illness or injury. In addition to participating in animal therapy visits, working with music therapists and collecting bravery beads for completing difficult procedures, Connor and his child life specialists came up with creative ways to stay entertained while he was flat on his back. He enjoyed target practice – which involved his caregivers hanging paper targets on the ceiling for him to shoot with his Nerf gun – and pranking his nurses when they entered the room.

Despite the considerable challenges he faced during his hospitalization, Connor was often more concerned with the happiness of those around him. He felt bad that he had taken up all of his parents’ attention during his stay, and in order to make it up to them, he wanted to plan something special for their wedding anniversary. With help from his care team, Connor planned a romantic dinner for his parents in the Children’s Miracle Network Garden, complete with flowers, battery-operated candles and a menu from Papa Joe’s.

Connor was released from the hospital two days before the COVID-19 lockdown. After six more weeks and a handful of follow-up appointments, his halo was finally removed. Today, three years after his initial injury, Connor is a happy, healthy and active 13-year-old who enjoys golf and tennis. His bravery, generosity and positive attitude are an inspiration to all of us.

Mila was due May 2, 2015 but she was born on January 10, 2015. Doctors referred to her as a “micro preemie” due to her premature arrival and her weight of only one pound, 10 ounces.

Although she was tiny, Mila reached all her milestones and was incredibly fierce. Once her brain matured, she was able to regulate her body temperature to stay warm on her own, and a few weeks later, she was breathing on her own and drinking from a bottle. Every day she grew stronger.

After 135 days in the Neonatal Intensive Care Unit at Beaumont Royal Oak, Mila was finally able to go home.

Today, Mila is a happy, healthy 7-year-old who has not only reached her milestones, but is surpassing them. Thanks to occupational and physical therapy she receives at Beaumont and a specially adapted bike from CMN’s Bike Day program, Mila is more active than ever.

Her future goal is to continue to build her strength and coordination, which would allow her to ride her bike independently. She is also currently active in karate and has worked her way up to an orange belt.

How donations helped change the future for Mila:

As a micro-premie baby in the NICU at Beaumont Children's, Mila received state-of-the-art care utilizing specialized neonatal equipment purchased by CMN like Giraffe OmniBed Carestations, Carescape Monitors, and High Intensity Bili Lights. Her parents were also cared for with Kangaroo Chairs and Rockers, allowing them to rock Mila, and rest when she rested.

Troy was admitted to Beaumont Children's for months after being diagnosed with cancer right before his senior prom. Troy was on track to interview at colleges to play the saxophone, however his treatment interfered with these plans. He shared with WDIV that he was devastated when he rst arrived, however pretty quickly he was able to come out of his shell and bond with the Child Life Department. Troy enjoyed many services such as making mosaic tiles with Art Therapy, playing games with Child Life, and playing in instrument playing with Music Therapy. Troy turned 18 while he was admitted to the hospital, and was gifted a new saxophone for him to play. He assisted Child Life in special holiday parties like passing out Halloween candy, and hosted daily Closed Circuit TV games that were streamed into patient rooms. Troy finished his treatment in December 2021, and is set to start college in the fall.

January 21, 2018 was supposed to be a fun day of sledding with friends but turned into a day Gabby’s family will never forget. While on an outdoor trip with her brother’s Cub Scout pack, eight-year-old Gabby went sledding with some other parents while her mom, Michelle, stayed behind to clean up the campsite.

Suddenly, Michelle heard a blood-curdling scream and one of the moms yelling, “They hit a tree! It’s bad! We need help!” Michelle instantly knew it was Gabby.

Gabby lay on the ground with her leg twisted in terrible directions. The mom she had been sledding with had been thrown from the sled and lay unconscious nearby. The group of parents leapt into action, getting medical care for the mother and quickly transporting Gabby by car to the nearest hospital.

While there, the emergency center staff failed to recognize the severity of Gabby’s injuries as the child waited more than 40 minutes before being taken to triage. Gabby began to turn blue and as Michelle says, “The looks on the doctors’ and nurses’ faces said it all. This was bad.”

After stabilizing Gabby, the doctor told Michelle a helicopter was on its way to transport her daughter and that she had the choice of three hospitals, one of which was Beaumont, Royal Oak. Without hesitation, Michelle chose Beaumont and eight minutes later, Gabby was being whisked into the emergency center where a team of doctors awaited her.

Gabby had sustained a broken leg, four broken ribs, a lacerated liver and a pulmonary contusion. She was admitted to the Pediatric Intensive Care Unit (PICU) to start the long process of healing. They set her leg from her hip to her toes and she received continuous CT scans, x-rays, and blood draws.

The laceration to Gabby’s liver was the most concerning. She ended up needing a blood transfusion and by the following morning she was a totally different child.

During her stay at Beaumont Gabby especially loved the visits from the pet therapy dogs. Her face lit up whenever they would enter the room. She received physical therapy in the hospital and after nine days was sent home with a wheelchair and a walker to assist in the next four months of recovery.

It was four months of homeschooling, physical therapy and learning to trust in her body and strength. Today, almost a year later, Gabby still has some aches and pains in her leg and sometimes in her ribs but has overcome injury and fear.

“We are forever grateful to the amazing doctors and nurses at Beaumont, Royal Oak. They were reassuring, positive and compassionate during the worst moment in a parent's life and certainly the scariest for Gabby,” says Michelle.