Meet The Kids

Dante

In so many ways, Dante Demuth is a typical child. He is a happy 9 year old filled with joy, energy, and love. Just like all children, he is unique. 

 

 

Dante was born with Down Syndrome and without an esophagus. He is non verbal and has limited vision and hearing along with significant physical and cognitive limitations, however, his languages are laughter, love, and music! Dante connects through music and through his joy and zest for life.

Dante has thrived and seems to grow tremendously from year to year at NBE. Recently, Dante received Kindermusik lessons at home with Dinah Frilling, a talented singer and Kindermusik educator with a strong desire to bring music to children with disabilities. 

 

 

In just a few months, Dante’s world has opened up! Instead of playing with mostly battery operated toys, he brings his loved ones xylophones, guitars, and ukuleles. He has a huge smile on his face and dances around the room when he encourages others to play music with him. Upon seeing Ms Dinah, he grabs her hand and leads her to his drums and guitar, ready to delight in the joys and sounds that music provides! 

Dolce Dante (sweet Dante), our peaceful warrior continues to teach his family valuable lessons- this one being that everyone can make a difference in this world! 

Makaio

This is a glimpse into Makaio’s story: Makaio has Cerebral Palsy due to a brain injury at birth. This injury caused him to be unable to walk, talk, or carry out basic life functions. 

 

Through extensive trial and error, continued research, and utmost devotion, Makaio’s family was able to find that a method called the Anat Baniel Method is the most powerful and effective therapy approach for him. This is a cutting edge, science based approach that can transform the lives of children and adults, helping them move beyond pain and limitations by accessing the amazing powers of the brain to change itself, thereby improving the mind and body and dramatically enhancing physical, cognitive, emotional, and creative performance. 

 

Makaio’s family has witnessed powerful changes in his development and countless other children as a result of this therapy. Those of us who are running this campaign believe that the addition of Kindermusik to Makaio’s life will also be beneficial to him. 

 

The benefits of music for special needs children has been accepted by medical professionals as being helpful in many ways. Listening to music helps build language and listening skills, and as we dig a little deeper by using a hands on approach to musical activities, we see that it does not only add joy, but also increases motivation, higher levels of relaxation, and improves movement and socialization skills as well. It can also give a non verbal child a way to communicate. 

Since Kindermusik is a process based program, not performance based, it allows a child to learn and grow at their own pace and promotes creativity as they find their own ways of participating in the activities. Makaio is at a ripe age of learning and change. He is on his way to reaching his full potential as a happy, more independent boy through the love of his family, Anat Baniel therapy, and attending Neptune Beach Elementary. Now with the help of those involved and contributing to this campaign, he will also enjoy the benefits of music therapy through Kindermusik! 

Evie

Here is a glimpse into Evie’s story: “Music is life. It touches our souls and beautifully express our deepest emotions. The first time I can recall Evie’s budding love of music was around 5 or 6 months old. She was in her exersaucer, bouncing and grinning while listening to Louis Armstrong. That love continued to blossom and she developed an appreciation for classical pieces. We have taken her to the symphony and she is riveted by the sounds. She has a particular fondness for brass. Having a music program and therapy in her school encourages her love. The notes speak to her and when given the opportunity to play an instrument her smile is illumination and it gives her a new voice. Music enriches her life and furthers her development which is why we love having this program at Neptune Beach Elementary.” -Candice Morris Sample Mother of Evie. Evie is a student at NBE. She loves joining her mother on many activities , school and music!! Evie is 7 years old and has Rett Syndrome 

Lucca

Here is a glimpse into Lucca’s story: “Lucca McLendon is a 12 year old boy who was born with an extremely rare genetic condition known as Phelan-McDermid Syndrome. Some traits of this syndrome cause Lucca to be completely non-verbal, developmentally delayed and have decreased muscle tone, amongst other things. Along with this syndrome comes several health issues such as Gastrointestinal problems and seizures. 

 

When we got Lucca’s diagnosis at 18 months old the Doctors told us that he would never walk, never talk and practically be a vegetable. We weren’t okay with that. We started Lucca in Physical, Occupational and Speech Therapy. He has been in physical therapy at Wolfson Rehab for almost 7 years and has progressed to the point of being able to walk on his own with some assistance. At a young age we noticed Lucca taking an interest in mainly musical toys, pressing the buttons over and over again so we thought of trying music therapy. He LOVED it. He would sit and watch the lady play the guitar and would touch the strings and play with the drums, all with a huge smile and lots of giggles. He was interacting with something! We had found something he was truly interested in. Now, he is able to navigate through an IPad finding all his favorite music songs with no help from us. Lucca started at NBE last year in 2nd grade. Since starting at NBE, we have seen Lucca jump to new heights in his progression. Physically he is doing more things on his own, such as walking, getting up and down out of chairs, and riding the special needs bikes. 

 

Cognitively he is learning routines and follows them every morning on his own, knowing exactly what to do next. When we found out that NBE had Music Therapy we were thrilled! Lucca loves listening to the songs and different sounds and interacting with the therapists and other kids. The smile on his face shows how cognitively aware he is of what is going on around him and that he is TRULY enjoying is. When you find something that you see your child really getting joy out of, you cannot beat that feeling. We are so thankful for this type of therapy!

Gianna

At some point between 18-28 weeks , there was an “intrauterine event”. Something happened in utero, an unknown trauma- and after that, Gianna’s brain stopped developing. 

 

When this beautiful baby girl was born, for a moment, everything stopped. She was here, she was alive, and she was perfect. Jamie and her new daughter, Gianna, shared a moment of undisrupted peace. Then… It was like a “whirlwind”. 

Gianna was rushed to the NICU because doctors detected enlarged ventricles in her brain. Her first day on earth was spent in a sterile hospital room, having an MRI. It had become apparent that Gianna’s “intrauterine event” had caused significant damage. She had Periventricular Leukomalacia, characterized by the death of white matter in the brain- it would likely cause developmental delays. 

 

Gianna’s first year of life was very chaotic. She suffered from seizures, respiratory issues, and hearing and vision damage. Gianna can see shadows and shapes, but relies on her other senses to take in her environment. 

When Gianna was 2, she was diagnosed with quadriplegic Cerebral Palsy. This explained her low muscle tone, trouble eating, and repetitive movements. Once this diagnosis came to light, Gianna’s symptoms made more sense.

 

At age 3, Gianna became eligible for public school. Immediately after starting school, she started therapy.  She has occupational, physical, speech, vision, and hearing therapy all at school. She works on standing and walking, and also sign language. Gianna can convey yes, no, more, dog, and a few other important words. Not only did she love being in school, she got to experience everything a kid should: field days, picture days, being in school plays, and having lots of fun! 

As the school year ended, Jamie noticed a huge change in her daughter. Gianna was happy learning, and loving her new environment of constant stimulation. 

Gianna has fought an uphill battle just to be where she is- a beautiful 9 year old girl who loves school, her friends, and her incredible family. Each year will bring new insights, experiences, and adventures. Gianna is an “adrenaline-junkie”who loves swinging, playing in the ball pit, and dancing to music! She often listens to music with headphones on while she learns.