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September 26, 2018 Beautifully Different, Children 0

Beautifully Different – Madelyn

Beautifully Different

A Project Celebrating Differences and Triumphs

Madelyn is Beautifully Different

Meet Madelyn! A beautiful and vibrant 8 year old young lady who has Attention Deficit Hyperactivity Disorder (ADHD) and also suffers from severe anxiety disorder. ADHD is a brain disorder marked by an ongoing pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development. There are many different types of anxiety disorders, but generally speaking, anxiety disorders involve more than temporary worry or fear. For a person with an anxiety disorder, the anxiety does not go away and can get worse over time. The symptoms can interfere with daily activities such as job performance, school work, and relationships.

Madelyn is Beautifully Different!

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The Diagnosis

There is no single test to diagnose ADHD. ADHD is diagnosed after a person has shown some or all of the symptoms of ADHD on a regular basis. According to her Mother, Madelyn has always had some issues with excessive crying and worry. However her family first started really realizing it was a problem in kindergarten. Her teachers said it really affected her performance in school and she would get upset and be upset for most of the day.

A Day in the Life of Madelyn

Madelyn’s anxiety and fear holds her back from doing a lot of things kids her age do with no hesitation. She worries and questions everything (new and even things she’s tried before). Madelyn worries about what could happen, about not having friends, about what people will think of her, and about the consequences of if something bad happens. She struggles in school whenever there is a test or a new experience. Also, any changes in routine upset her. Often times it is physically paralyzing to her.

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Empathetic. Kind. Creative.

Even with all her fears Madelyn is actually is quite a daredevil! She loves gymnastics and is extremely flexible. Madelyn would like to take aerialist lessons or do ariel yoga. Also, she attends a local STEM school and really enjoys working with science and technology. Madelyn is also in girl scouts and loves going camping and helping others. She also has a little chihuahua named Rosalina (Rosie for short) that she adores, and vice versa, and really helps her with her anxiety. She really comes out of her shell when she is in front of the camera and would like to model! When Madeline grows up she would like to be a plastic surgeon and help people with deformities. Madelyn is an amazing girl with a very bright future! She is making this world a better place, with her kind soul and warm smile.

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For more information about the Beautifully Different project and how you can participate, click here. To follow me on Facebook click here!


September 25, 2018 Beautifully Different, Children 1

Beautifully Different – Layla

Beautifully Different

A Project Celebrating Differences and Triumphs

Layla is Beautifully Different

Meet 8 year old Layla. When Layla’s Mom was pregnant with her she suffered a perinatal stroke. A perinatal stroke is a stroke that happens in the womb. A stroke can occur before birth, in infants, children and young adults. The risk of stroke is highest in the first year of life and peaks during the perinatal period (a few weeks before and after birth). Sixty percent of infants with a stroke diagnosis have specific symptoms such as recurrent focal seizures in the first three days of life. (Children’s Hemiplegia and Stroke Association) Layla’s stroke affected the left side of the brain and is complicated by seizures.

Layla is Beautifully Different!

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The Diagnosis

Layla was diagnosed at 4 months. The stroke left her with right side weakness, speech delay, and difficulty comprehending situations. A month after she was diagnosed, at age 5 months, she developed seizures and a condition known as hypsarrhythmia. Hypsarrhythmia is a disorganized, chaotic pattern of brain waves that occurs in children with infantile spasms (IS) but not in other seizure disorders. Layla was in the hospital for two months because no medication could control the seizures and IS. The only option left was brain surgery to remove the damaged areas with a low survival rate. Her neurologist worked night and day to find an alternative. She did, ACTH injections. Within a week, she was improving and within a year the hypsarrhythmias stopped!  Layla continues to have seizures which have required hospitalizations but she is controlled now with medication.

A Day in the Life of Layla

Layla has therapy almost everyday. She has to work really hard, sometimes after a long school day. Unfortunately, she doesn’t get to have many after school activities or play dates but she has an amazing group of therapists. They make their sessions not only productive but fun and entertaining. Layla has limited function of her right hand and she wears a brace on her right leg during the day and a splint with a knee brace at night. She can’t run as fast as other kids or play on the jungle gym but she has a mean tennis swing!

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Spunky. Loving. Determined.

Despite and because of all Layla has been through, she is a very strong, determined and empathetic person. Her therapists have said she will be CEO of a company one day with her great organizational skills and perseverance. Layla also has the biggest heart ever! She cares for everyone, young and old. She is the greatest helper around. She loves to clean (a parents dream!). Layla has a great memory of names, numbers and schedules. Her nickname is the “family memory stick”. Layla is such a beautiful and amazing little girl!

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For more information about the Beautifully Different project and how you can participate, click here. To follow me on Facebook click here!


September 20, 2018 Beautifully Different, Children 0

Beautifully Different – Giovanni

Beautifully Different

A Project Celebrating Differences and Triumphs

Giovanni is Beautifully Different

Meet Giovanni! This incredible 4 year old little boy was born at just 26 weeks, weighing 1 pound 5.2oz. He has a total of 22 diagnosis, Prematurity, Periventricular leukomalacia, Quadriplegic Cerebral Palsy (CP), and failure to thrive to name just a few. He spent the first 118 days of his life in the NICU and has undergone 10 different surgeries. Gio lives his life a little differently given his disability, limitations, and sensory challenges. Gio DOES have full range of motion and use of his left arm & hand. He also has HKAFO’s (braces) for his feet so he is able to walk in his gait trainer (more supportive walker). Gio also has a power chair that doesn’t play a big role just yet, but will eventually be incorporated in daily life since he fatigues very easily. He has learned how to maneuver himself around the house by scooting on his back.

Giovanni is Beautifully Different!

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The Diagnosis

Gio’s family learned of his brain damage about half way through his NICU stay. His routine head ultrasound was showing “white space “ bilaterally in the frontal lobes. This is called PVL (periaventricular leukamelacia). The damage is grade 3-4 (moderate to severe). This is the result of deprived oxygen to the brain when both of his lungs collapsed 24 hours after birth. This news was absolutely devastating for his family. What made it even harder for his them is not knowing how it would effect him, as every child is different. The only thing the doctors were correct about given this diagnosis, is how his legs are affected.

A Day in the Life of Giovanni

Gio’s daily lifestyle is far different from that of a typical child. Gio needs a lot help physically. He practically lives at therapy! He has some sensory issues so he has to take life and life activities one day at a time. Eating has always been a struggle. Due to his CP and constant burning of calories , he requires triple the amount of your average toddler. We incorporate therapy in every day life when he is not physically at therapy. Constant practicing of fine motor skills , crafts & Play that require use of both hands, Core building strength, etc. According to Gio’s Mom, what is most heart breaking is Gio so badly WANTS to walk, play, jump, sit, etc … and can comprehend that he can’t. Almost everything that comes with children naturally is a struggle for him. Gio has had to learn (chewing, drinking , grasping, balancing, feeding himself, etc) He knows no different though as his family has always treated him as a typical child!

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Loving. Determined. Brave.

One absolutely amazing thing about Gio is that he can light up a room from the second he arrives! He is definitely a charmer! He has a beautiful a personality and is so smart! Gio ALWAYS has a smile on his face no matter what the circumstance. Gio is defying the odds! Everything the doctors warned & told them he wouldn’t do… he is doing! He can eat independently, clap, color, walk with the proper help and equipment, talk, read, has an amazing sense of humor and personality, comprehends and is aware of his surroundings, he is amazing! Gio truly is an inspiration and has taught his family to NEVER take even the simplest of tasks for granted. He is such a happy little boy, and even though I only spent 15 minutes with him and his parents, you could see the love and support within their family. I am so happy to have met this incredible little boy!

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For more information about the Beautifully Different project and how you can participate, click here. To follow me on Facebook click here!


September 12, 2018 Beautifully Different, Children 2

Beautifully Different – Naomi

Beautifully Different

A Project Celebrating Differences and Triumphs

Naomi is Beautifully Different

Meet Naomi! Naomi is a beautiful 16 year old young lady who has a dual diagnosis of Autism and Attention-deficit/hyperactivity disorder (ADHD). While the primary components of ADHD and Autism are different, there is some overlap in symptoms. Autism, or autism spectrum disorder, refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences. Where as a person with ADHD has differences in brain development and brain activity that affect attention, the ability to sit still, and self-control. Naomi is Beautifully Different!

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The Diagnosis

Officially, Naomi received her diagnosis of Autism at the age of 10. She started seeing a neurologist at the Cleveland Clinic when she was 4. After finishing early intervention services and still having difficulty her parents sought answers from a neurologist. Between the age of 4-5 and 5 she was diagnosed with ADHD. They still had concerns with her processing and wondered why she still was having difficulties. She would either get so upset from things that overwhelmed her or she would shut down to the point they thought she was having seizures and was assessed for that. She struggled in school and when she was in larger groups. After slow progress and continued questions they pursued an evaluation with the behavior specialists at Cleveland clinic and confirmed her diagnosis of ADHD as well as Autism.

A Day in Naomi’s Life

As a baby Naomi was very difficult to soothe. She was comfortable with her mom and dad, but was often anxious and easily upset with others. She had disrupted sleep patterns from infancy through her preschool years. Naomi had difficulty with her overall development.

In school, Naomi often finds it hard to concentrate. It take her longer to put together all the steps it takes to complete tasks while filtering out distractions. She has to work extra hard to read people cues and to understand the nuances of life including sarcasm and others facial expressions. She has worked hard to practice having eye contact and learning what we refer to as the soft skills.Naomi often needs extra time to write as this is a difficult task to complete. Her parents are excited she can now take notes on her chrome book and typing is easier!

“It makes me feel different and it is hard to socialize. But I know I have the potential to do it.” -Naomi

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Unique. Endearing. Patient.

Naomi is such a sweet and amazing young lady! She has lots of fun interests too! Some of her interests include Dr Who and her favorite actor David Tennant. She even got to hang out with him a bit longer since she was not catching the urgency of his handlers to keep the line of comic con picture seekers moving! Naomi works very hard, and she is a true inspiration to her family, and everyone’s life she touches. Within Naomi is an old soul that sees the world differently. She brings music to her home and a different perspective to her family’s lives.

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For more information about the Beautifully Different project and how you can participate, click here. To follow me on Facebook click here!


September 9, 2018 Beautifully Different, Children 0

Beautifully Different – Haylie

Beautifully Different

A Project Celebrating Differences and Triumphs

Haylie is Beautifully Different

Meet Haylie! Haylie is a sweet, energetic, amazing little girl, who has Pendred Syndrome. Pendred Syndrome is a rare genetic disorder characterized by severe to sensorineural hearing impairment and a malformation of certain bones in the inner ear. Pendred syndrome is a result of a defect in the production of the thyroid hormone, which controls the metabolism and helps regulate body growth. Haylie’s hearing declined after birth, but she was not officially diagnosed until she was 2. Haylie is Beautifully Different!

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The Diagnosis

Though Haylie wasn’t diagnosed with Pendred Syndrome until she was two, it all really began at birth. In the hospital, all newborns are given a hearing test, Haylie did not pass hers. Through many tests and sedated Auditory brainstem response tests she was finally diagnosed at 2 years old with bilateral sensineural hearing loss. Her hearing started getting progressively worse in a short period of time so her parents opted to get an MRI done which showed Haylie has enlarged vestibular aqueducts which cause balance issues. They decided to do genetic testing and she also came back positive for Pendred Syndrome which causes hearing loss and thyroid problems. For the past year Haylie has seen many doctors and things have popped up through the year that just get added to the list of what makes Haylie-Haylie!

A typical day for Haylie

Haylie has to wear hearing aides in both ears. Her communication and speech are not like other typical children her age. She goes to speech therapy and she works hard everyday with using words or sign language. Haylie has so much energy she can do laps around others her age! She is very active and loves water activities, she can be at the playground running around for hours to burn off some energy and still be energized!

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Fearless. Energetic. Happy.

Haylie is such a happy child, very friendly towards others and is a great little helper! She loves making new friends! Also, she finally has started to leave her hearing aides in a few months ago and started wearing charms on them. (cute little butterflies!) She is little miss independent. Haylie handles all of her therapies like a champ! She reads lips, which is very helpful for her communication! Haylie is an amazing and inspirational little lady!

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For more information about the Beautifully Different project and how you can participate, click here. To follow me on Facebook click here!