Posts In: Children


October 24, 2018 Beautifully Different, Children 0

Beautifully Different – Andrew

Beautifully Different

A Project Celebrating Differences and Triumphs

Andrew is Beautifully Different

Meet Andrew! Andrew is an amazing little guy, who has defied the odds! Andrew was born very premature, at 25 weeks and weighed only 15 ounces at birth. Babies born before 26 weeks weighing less that 1 pound 12 ounces are considered Micro Preemies. Micro preemies are more like to have extended NICU stays, as well as many other health related issues. Sweet Andrew has an Atrial Septal Defect (ASD), chronic lung disease, and developmental delays. He also spent 200 days in the NICU and underwent 4 surgeries. Andrew is amazing, and Andrew is Beautifully Different!

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The Diagnosis

Atrial Septal Defect

Atrial Septal Defect (ASD) is a “hole” in the wall that separates the top two chambers of the heart. This defect allows oxygen-rich blood to leak into the oxygen-poor blood chambers in the heart. ASD is a defect in the septum between the heart’s two upper chambers (atria). The septum is a wall that separates the heart’s left and right sides. Andrew’s defect was discovered when he was one year old.

Chronic lung disease

Chronic lung disease (CLD) is a general term for long-term respiratory problems in premature babies. CLD results from lung injury to newborns who must use a mechanical ventilator and extra oxygen for breathing.

A Day in the Life of Andrew

For now he is your typical energetic sweet little boy! He is very much a typical kid! Andrew has to have annual follow ups with tests to help decide if/when heart surgery is necessary. He also has developmental delays from being premature. Andrew does weekly physical therapy to help him with him delays.

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Strong. Survivor. Funny.

Andrew absolutely loves to make people laugh! He is creative and loves to bake and do crafts. he has a wild streak (which is pretty typical of a boy his age) and he like to run! Most of all, he is sweet and strong. Andrew’s smile lights up every room he enters!

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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!


October 20, 2018 Beautifully Different, Children 0

Beautifully Different – Kylin

A Project Celebrating Differences and Triumphs

Kylin is Beautifully Different

Meet Kylin! Kylin was born with Dravet Syndrome, which is a rare, intractable, lifelong form of epilepsy. It effects 1 in every 16,000 children within their first year of life. Dravet Syndrome, also known as “Myoclonic Epilepsy of Infancy”, and has many devastating side effects. Some include sensory integration, behavioral and developmental delays, frequent and prolonged seizures, sleeping difficulties, and chronic infections. There is no current cure for Dravet Syndrome and treatment options are at a minimum. Kylin is Beautifully Different!

Kathy Rogers Photography_Beautifully Different_Children Photographer in Elyria_Little boy_Dravet Syndrome

The Diagnosis

Kylin’s parents learned of Kylins difference around 8 months. He had his first seizure after his 4 month shots, and his second occurred at 6 months, unexpectedly.  Kylin has had many long hospital stays, but the his most recent hospitalization was his most extensive.

Kylin had a seizure that lasted hours, which in return resulted in him having a breathing tube and being flown to rainbows. Unfortunately, He spent 22 days in the PICU, and virtually all of that stay he was intubated. He would not wake up after all sedation medications were being stopped, his EEG was picking up seizures, and he was extremely ill. The physicians ran all tests, and checked all levels to attempt to find the source of his reoccurring fevers. Para-influenza was his positive conclusion, and that had taken a toll on him. The Para-influenza had caused Acute Encephalopathy in the Occipital Lobe of his brain. As days continued, Kylin finally awoke from his coma status. Due to the effects on his brain and his current mental state, doctors were recommending he go to a rehab facility.

His experience at the rehab center was one accompanied by an emotional roller coaster day in and day out. Kylin had an NG Tube, wasn’t talking, walking or showing any signs of his baseline. His myoclonus was getting worse, and they knew the only fix was medication increases. This was a long road of everyday therapies, 24/7 care, and lengthy drives back and forth. On January 19, 2018, Kylin went home and has made a remarkable recovery, which surpassed every expectation from his physicians! He is running, playing, talking some, and is more endearing than ever.

A Day in the Life of Kylin

Kylin has therapy Monday through Friday, four therapies twice a week. He attends school after therapy each day for two hours. He could not adjust to an all-day typical classroom, with a large amount of children. Additionally, Kylin cannot go outside on warmer to hot days, he cannot become over excited, he takes 5 medications 3 times daily, and he has a mentality of a 2 year old. Hhis life revolves around constant doctors appointments, therapies, hospitalizations and being indoors.

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Resilient. Heroic. Loving.

Kylin is amazing! He is a superhero!! Kylin has taught his family the true meaning of love, and how to not take things for granted. Undoubtedly, the impact he makes on them and others is truly a blessing. Above all, he has a smile that brightens the world, a hug that moves mountains, and a heart filled with the purest love!!

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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!


October 18, 2018 Beautifully Different, Children 0

Beautifully Different – Olivia

Beautifully Different

A Project Celebrating Differences and Triumphs

Olivia is Beautifully Different

Sweet beautiful Olivia is a amazing little 4 year old with Trisomy 21. The term trisomy is used to describe the presence of three chromosomes, rather than the usual matched pair of chromosomes. Olivia was born with three #21 chromosomes. Trisomy 21 is also known as Down syndrome. She also has cognitive and physical delays, as well as mild to moderate hearing loss. Olivia is Beautifully Different!

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The Diagnosis

Something unique about Olivia, is that she is a twin! She, and her twin, were born at 34 weeks and the Neonatologist knew right away that she had physical signs of Down syndrome. He told us his suspicions right in the delivery room. Olivia spent 21 days in the hospital after birth. She had difficulty eating both because of her Downs and also her lack of endurance due to a congenital heart defect. She had a ventricular septal defect (VSD), atrial septal defect (ASD) and cleft mitral valve. Olivia came home with a nasogastric tube to assist with feeding so she could gain weight for surgery. She had open heart surgery at Nationwide Children’s Hospital to repair her heart on February 11, 2015. She was 6 months old. Olivia has had several smaller surgeries, including two sets of ear tubes, eye surgery to correct nystagmus, tonsillectomy and adenoidectomy.

A day in the Life of Olivia

Olivia attends preschool every day with her twin. They are in the same class. Olivia moves through her day with the rest of the kids. Sometimes, she gets a little distracted and sometimes she chooses not to listen as do most all children her age! She does not have many words yet,  so she works hard on effectively communicating with sign language and other physical and verbal cues that are unique to her. She participates in circle time, story time, play time, structured learning and play. So, to sum it up, her day looks much like any other 4 year old’s does!

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Loving. Determined. Smart.

Like any other child, Olivia is one of a kind. She has a firecracker personality to match the fierceness of her red hair! Her little smile and almond eyes can brighten anyone’s day. She started walking when she was 3.5 years old. She is wildly independent, sassy, smart and resourceful. To underestimate her would be a mistake! She is capable of great things. With the help of her family, friends and amazing therapists, there is nothing this little girl won’t accomplish. Above all, Miss.Olivia is truly amazing!

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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!


October 18, 2018 Beautifully Different, Children 0

Beautifully Different – Luke

Beautifully Different

A Project Celebrating Differences and Triumphs

Luke is Beautifully Different

Let me tell you about this amazing 8 year old boy! Luke has Autism, Attention-deficit/hyperactivity disorder (ADHD), sensory processing disorder, social integration disorder, and asthma. Also, Luke is one of the most engaging and enthusiastic boys I have ever met! He wears his heart on his sleeve, and will talk your ear off! He is amazing and he is Beautifully Different!

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The Diagnosis

Luke was diagnosed with ADHD and sensory processing disorder at age 4, and the rest of his diagnosis’ were about a year and a half later.

Autism

According to Sutism Speaks, Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication. Autism affects 1 in 59 children.

Attention-deficit/hyperactivity disorder

Attention-deficit/hyperactivity disorder (ADHD) is a brain disorder marked by an ongoing pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development. Furthermore, according to The ADD Resource Center, 6.4 Million children between 4 and 17 have been diagnosed with ADHD.

Sensory Processing Disorder

Sensory processing (originally called “sensory integration dysfunction” or SID) refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Sensory Processing Disorder (SPD), exists when sensory signals are either not detected or don’t get organized into appropriate responses.

Asthma

Asthma is a lung disease that makes it harder to move air in and out of your lungs. With asthma, the airways in your lungs are often swollen or inflamed. As a result, this makes them extra sensitive to things that you are exposed to in the environment every day, or asthma “triggers.” A trigger could be a cold or the weather, or things in the environment, such as dust, chemicals, smoke and pet dander.

A Day in the life of Luke

Luke’s day is a little different from that of a typical 4 year old boy. He has obsessions and won’t talk about anything but what he is . He has few friends that he is really close to because of poor social skills. Also, Luke goes to a special school where he takes karate as part of his curriculum! Additionally, he struggles with loud noises and doesn’t know how to react to certain situations. He doesn’t always show emotion like other kids.

Kathy Rogers Photography_Beautifully Different_Children Photographer in Elyria_Little boy_autism_adhd

Sweet. Playful. Talkative.

Luke is really a sweet and very kind little boy! He has an amazing bond with his Mom and his Dad, and they are such a great support system for him! Also, he is the type of person who see’s the positive side of life, very optimistic! Luke makes his family’s life colorful and he does that for other people as well! He can makes friends instantly with anyone! Above all,  Luke loves people, and has an amazing zest for life!

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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 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!

Kathy Rogers Photography_Beautifully Different_Children Photographer in Elyria_ADHD_severe anxiety disorder_service dog_teal dress_studio photography

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.

Kathy Rogers Photography_Beautifully Different_Children Photographer in Elyria_ADHD_severe anxiety disorder_service dog_teal dress_studio photography

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!

Kathy Rogers Photography_Beautifully Different_Children Photographer in Elyria_little girl_Purple dress_perinatal stroke_hypsarrythmias_AFO

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!


August 26, 2018 Beautifully Different 0

Beautifully Different – Jillian

Beautifully Different

A Project Celebrating Differences and Triumphs

Jillian is Beautifully Different

Meet Jillian. This amazing girl is your typical amazing 11 year old girl, in almost every way. However, in May of 2017, Jillian was diagnosed with Epilepsy. Epilepsy is a chronic neurological disorder in which the normal chemical and electrical activities between nerve cells in the brain (neurons) become disturbed. This disturbance causes the neurons to fire abnormally, causing seizures. In a seizure, many neurons fire at the same time, much faster than usual, up to 500 times a second. Over a lifetime, 1 in 26 people will develop epilepsy at sometime in their life. Jillian is 1 in 26, and Jillian is Beautifully Different!

Kathy Rogers Photography_Beautifully Different_Children Photographer in Elyria_Epilepsy

Last May, Jillian had a seizure after a soccer game, then she had another seizure after basketball camp a week later. She went through many tests and was finally diagnosed with epilepsy. Her doctors have struggled to find any medicine that can control the seizures. She has had to miss countless sports practices and games and is struggling in school. Also, Jillian has had auras almost daily. An aura is a feeling, experience, or movement that just seems different. It can also be a warning that a seizure is going to happen.

Kathy Rogers Photography_Beautifully Different_Children Photographer in Elyria_Epilepsy

Sweet. Warrior. Energetic.

Jillian lives to play sports! She has always wanted to be a professional soccer player when she grows up! However, her epilepsy has caused her to take a temporary step back from sports as she has had seizures during soccer practices, soccer games, and basketball games. She continues to amaze her family with her strength through all of the hospital stays, the millions of tests, the numerous seizures, and the drastic change this has made in her life! She is their epilepsy warrior!!!!

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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!