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Beautifully Different – Emilia

Beautifully Different

A Project Celebrating Differences and Triumphs

Emilia is Beautifully Different

I am so excited to introduce the amazing and adorable Emilia. Emilia is a spunky and energetic 7 year old and in every way appears to be a very typical little girl. Sweet Emilia suffered a stroke in utero, which is known as a Perinatal stroke. Perinatal stroke occurs in 1 in every 2800 live births, and 60% of the children who survive a stroke will have permanent neurological problems.Emilia has  right hemiparesis which is a weakness of the entire right side of her body. Emilia is Beautifully Different!

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The Diganosis

According to Emilia’s Mom, her pregnancy with Emilia was picture perfect, completely normal and she was born full term at a healthy 7 lbs 15 ounces. Over the next months of her life she was meeting or exceeding all of her developmental milestones until the age of approximately 9 months. They first noticed something was a little different when she would only “arm crawl” and not even attempt to push up to crawl or pull up on furniture to walk. She also started becoming left hand dominate. Emilia has undergone intensive Constraint-induced movement therapy (to teach and promote more movement on her right side) which involves casting of her left arm, attends weekly ST, OT, and PT therapies, and gains a lot of strength and flexibility with her weekly swim lessons and swim team.

A day in the life of Emilia

Emilia is able to lead a pretty regular life but wears a brace on her right foot and a sleeve on her arm. She also takes medication to assist with her high muscle tone daily. Emilia is able to do whatever she puts her mind to, it just requires more effort and sometimes a little modification. She loves to stay active! I have known Emilia for a few years now, and I was unaware of her condition until her Mom contacted me to be a part of the Beautifully Different Project. Despite her differences and struggles, she is sweet, and bright, and such an incredible little girl!

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Determined. Sweet. Artistic.

Emilia is so strong. She is determined to do things just like everyone else, even if that means learning modifications to make that happen. Emilia loves the water and has been swimming since she was just a baby. Swimming is her neutralizer and she is able to be herself in the water. She has taken her love of swimming to the next level and is now on a swim team! Swim team allows her to constantly push herself both mentally and physically to the next level. Along with her new dog Abbey (therapy dog in training) Emilia is learning to embrace her differences and challenge the world to be a better place.

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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


Beautifully Different – Gabby

Beautifully Different

A Project Celebrating Differences and Triumphs

Gabby is Beautifully Different

Meet Gabby! Gabby is a sweet and beautiful 11 year old girl who is living with Type 1 Diabetes. Type 1 diabetes is a chronic, autoimmune condition that occurs when the body’s own immune system attacks the insulin-producing beta cells of the pancreas. This attack leaves the pancreas with little or no ability to produce insulin, a hormone that regulates blood sugar. Without insulin, sugar stays in the blood and can cause serious damage to organ systems, causing people to experience Diabetic ketoacidosis. Diabetic ketoacisosis can be life threatening without medical intervention. Type 1 Diabetes is life altering and something that Gabby will always have to deal with, but she takes it all in stride! Gabby is Beautifully Different!

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The Diagnosis

Gabby was diagnosed February 22, 2017, before she was diagnosed she had started drinking an excessive amount of water. She was extremely hungry but had a lack of energy. She would come home from school exhausted. Then she started vomiting. But her vomit wasn’t normal, it was sweet smelling. Her Mom took her to see the doctor and they immediately checked her sugar based upon symptoms. Her sugar level was at 390. The average person should be 80-120. The doctor looked at Gabby’s Mom and said “She’s Type 1 Diabetic” She was then checked for keytones through a urine test, it was high. They were sent to Fairview hospital ER since they had a pediatric ER, where she spent 3 days in the PICU and 2 days on a regular floor

Living With Type 1 Diabetes

Gabby receives insulin for every carb she intakes, liquid or food. As a result, she has a pump, which has to be changed every three days and is inserted into her skin- it holds all the insulin. Her carb intake is inserted into her PDM (personal diabetes manager) which calculates how much insulin she is given based upon her insulin to carb ratio and time of day. Gabby also wears a CGM (Continuous Glucose Meter) which is also inserted into her skin. It helps her to see where her sugar is at at all times of the day. It has alarms which alert her to high blood sugar levels or low blood sugar levels. Consequently, type 1 diabetes no two days are ever the same, Gabby can do the same exact routine & carbs but EVERYTHING affect blood sugar levels. So she must be vigilant.

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Strong. Resilient. Courageous.

Gabby is such a sweet and polite girl! Nothing about that has changed! Gabby is a dancer. She loves dance! This year she had 14 dance classes every week! Three of those classes she was the teachers aide to the 3-5 year old dancers. She is part of the Competition team, she competed in 3 competitions this year for 4 different dance routines. At recital she performed in both performance times with a total of 12 costume changes. Gabby remained on the Honor Roll all year. She also plays the Violin for Orchestra & takes private Violin lessons, and is a Girl Scout. Gabby doesn’t let her Diabetes keep her down she is 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!


Beautifully Different – Aryia

Beautifully Different

A Project Celebrating Differences and Triumphs

Aryia is Beautifully Different

I recently met the most amazing little 2 year old girl, Aryia. Aryia started her life earlier than most babies, she was born at just 26 weeks gestation weighing only 12.7 ounces. Aryia’s Mom was on hospital bed rest at Fairview Hospital because she had no amniotic fluid. They did an ultrasounds the morning Ariya was born and discovered she had a placental abruption and her heart rate was dropping. She was then delivered by emergency c-section, where they later discovered her intentines were dying. They did an ileostomy  (a surgical procedure in which the small intestine is attached to the abdominal wall in order to bypass the large intestine; digestive waste then exits the body through an artificial opening called a stoma) and then later, a reversal. The doctors were unsure if she would even make it, but she is a warrior and she fought hard!

The Diagnosis

Aryia is almost 2 and has Chronic Lung Disease, Periventricular Leukomalacia, Rupture of the Premature Membranes in her eyes which has lead to having a vision impairment called Cortical Vision Impairment (CVI). She also has a grade 3/4 Brain bleed, epilepsy and spastic quad cerebral palsy, a Gastrointestinal Tube (G-tube) and a Jejunostomy Tube (J-tube). Aryia is the definition of Beautifully Different!

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Aryia’s daily life is a little different from a typical 2 year old. She is non-verbal and cannot walk, crawl, or sit unassisted. Aryia depends on her Mom, Dad, and other loved ones to care for her and meet her needs. She also see’s a long list of specialists and attends numerous therapies. Aryia goes to United cerebral palsy where she sees a Physical Therapist, Occupational Therapist, and Speech Therapist.  She sees vision therapists through the Cleveland Sight Center for her CVI, she sees an epilepsy specialist ,Gastroenterologist, pulmonologist,  and nutrition specialists on a regular basis. Aryia also sees a pediatric surgeon, neurologist, optometrist, cerebral palsy clinic, cardiologist, ent, and endocrinologist.

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Infectious. Fearless. Sassy.

It’s no secret that Aryia has been through a lot in her short little life so far. But, she is the definition of resilience and perseverance. She has the most amazing smile and laugh, she lights up the entire room! When you have a support group like Aryia’s, people who believe in you and know you are capable of amazing things, you can overcome so much. This is exactly what Aryia has done! Someone very close to Aryia said “Just when you think you know what she can and can’t do she will surprise you. She likes to control situations like not letting her mom take her trick or treating!” Aryia is amazing. She is strong. She is Beautifully Different!

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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!


Beautifully Different – Jacob

Beautifully Different

A Project Celebrating Differences and Triumphs

Jacob is Beautifully Different

Meet Jacob. I connected with Jacob immediately. His sweet smile and inquisitive nature warmed my heart! Jacob has a large omphalocele, severe scoliosis, failure to thrive, hydrocephalus, as well as heart and lung limitations. He has a 70 degree curve in his spine and has frequent surgeries but that doesn’t keep him down! Jacob is Beautifully Different!

Omphalocele

An omphalocele is a birth defect in which an infant’s intestine or other abdominal organs are outside of the body because of a hole in the belly button (navel) area. Since the intestines are covered only by a thin layer of tissue and can be easily seen. This birth defect is repaired as an infant through surgery.

Severe Scoliosis

Scoliosis is defined as an abnormal lateral curvature of the spine. Jacob has a 70 degree curve in his spine, and has had steel rods placed in his back to help correct it.

Failure to Thrive

Failure to Thrive is when height and weight measurements fall below the third or fifth percentile, or a downward change in growth across two major growth percentiles. There are many different reasons why a child may have a failure to thrive, one of those is having severe reflux, which was Jacob’s case. He coded three times at the age of 3 months, and had a feeding tube placed at 5 months to help with the reflux.

Hydrocephalus

Hydrocephalus, is a condition where there is an abnormal build up of CSF (cerebrospinal fluid) in the ventricles of the brain. The build-up is often caused by an obstruction that prevents proper fluid drainage.
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The Diagnosis

Jacob was adopted by an amazing and wonderful family! They learned of his conditions shortly before they started fostering him. (he was their first foster child, and they later adopted him.) Jacob has several things going on, and despite all of this he remains a sweet and energetic boy! From what his family was told, he was born pretty much unable to breathe and was rushed to Rainbow Babies and Children’s hospital. He had his first surgery at 11 days old and was ready for his family at 6 weeks after recovering from surgery!

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Loving. Joyful. Vibrant.

Jacob is such a joy. First of all, he is sweet, and caring, and makes you love him right from the start!  Jacob is one of 6 kids from his birth mother who sadly passed away 4 years ago. Jacob and his adoptive mother were able to spend a lot of time at hospice with her before she passed. In the words of Jacob’s Mom: “We would choose Jacob over and over even if his life was even more limited. He deserves a normal and happy life and he has one!” Though I only spent a small amount of time with Jacob and his Mom, I could see the love and support. This amazing boy has a loving and supportive family, and he will do amazing things!

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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!


Beautifully Different – Scarlett

Beautifully Different

A Project Celebrating Differences and Triumphs

Scarlett is Beautifully Different

Meet beautiful and sparkling Scarlett! This sweet girl is such a little ray of sunshine. Scarlett has Pyruvate Dehydrogenase Complex Deficiency Syndrome (PCDC) which is a mitochondrial disease that prevents her body from breaking down carbohydrates.In addition to PCDC, Scarlett also has agenesis of the corpus callosum, enlarged ventricles in the brain, a hearing disability, feeding tube dependent , epilepsy, cerebral palsy and most recently she was diagnosed with scoliosis. Scarlett is Beautifully Different!

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The Diagnosis

Scarlet was diagnosed with PCDC when her mother was 32 weeks pregnant with her.Pyruvate dehydrogenase complex (PDC) deficiency is a type of metabolic disease. This means that the body is not able to efficiently break down nutrients in food to be used for energy. Symptoms of PCDC deficiency include signs of metabolic dysfunction such as extreme tiredness, poor feeding, and rapid breathing. Symptoms usually begin in infancy, but signs can first appear at birth or later in childhood.

Daily Life

Scarlett can not walk, talk, sit or eat on her own. Everyday is different for her especially with her seizures. She depends greatly on her wonderful family to assist with her daily routines. Scarlett spent 28 days in the NICU when she was first born. She also spent 29 days in the PICU after being life-flighted from respiratory failure where she coded twice. Scarlett has had a total of 9 surgeries.

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Warrior. Happy. Miracle.

Scarlett brings so much joy to everyone she meets. There isn’t anything her family won’t do with her they just adapt and figure out different ways to do it! I think that is so amazing! She loves spending time with her cousins Heather and Kelsey and her Auntie Shelby. She is a daddy’s girl. Scarlett is has an amazing support system and so much love in her life. You can see it on her sweet face, and how she lights up around her family. 

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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!


Beautifully Different – Colton

Beautifully Different

A Project Celebrating Differences and Triumphs

Colton is Beautifully Different

Meet sweet Colton! Colton is a beautiful and vibrant little boy. He has Congenital Hydrocephalus, Partial Agenesis of the Corpus Callosum, and Chiari Malformation. Colton is Beautifully Different!

Congenital Hydrocephalus

Congenital Hydrocephalus is a condition where the CerebroSpinal Fluid in his brain has no way to re-absorb into his body, as it should. There is currently no known way to prevent or cure hydrocephalus and the only treatment option today requires brain surgery. Colton wasn’t even 24 hours old, when he received his first brain surgery to insert a medical device called a “shunt” into his brain. It has a tube that goes behind his ear, in his neck, all the way down to a cavity in his abdomen to drain the CSF from his brain. Unfortunately, shunts have a very high failure rate – 50% of shunts fail within the first 2 years. When Colton was 6 months old, his shunt stopped working, which caused his head to grow at a rapid rate, and he had to have another brain surgery to replace it.

Partial Agenesis of the Corpus Callosum

Partial Agenesis of the Corpus Callosum, which means that he’s missing the middle part of his brain that connects the two hemispheres of his brain. Your left brain controls the right side of your body, and your right brain controls the left side of your body. The corpus callosum is called the “information highway” that communicates to both sides of your brain. Colton is missing this piece, and things that come natural and easy for “neural typical children”, is more challenging for Colton. He has received Occupational Therapy, and Physical Therapy since he was and infant, and he started Speech Therapy at 18 months. Colton receives an hour of each therapy a week to help him hit milestones

Chiari Malformation

A Chiari Malformation, is a condition where the bottom part of Colton’s brain is being pushed into his spinal column. This causes pressure on the cerebellum and brain stem that may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF). This is a serious condition that may cause a variance of symptoms, and they are still investigating what it means for Colton. He has periodic MRIs to check for pockets of CSF called Syrinx. If he were to have a syrinx (cyst of blocked CSF), and becomes symptomatic, he will need an intense brain surgery called a “decompression” where they cut away some of the bone in the skull to make room for his brain, to hopefully relieve pressure.

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The Diagnosis

When Colton’s parents went in for their 18 week anatomy scan (during pregnancy) the ultrasound tech continured to measure his head multiple times. During that ultrasound, they found that the ventricles in Colton’s brain were enlarged, and they were concerned. His Mom had to receive bi-weekly ultrasounds the rest of her pregnancy, where they observed his ventricles and head circumference continue to grow at a rapid rate. Through MRIs, they discovered the Partial Agenesis of the Corpus Callosum, and Chiari Malformation. Colton has had 4 brain surgeries so far, and there is a possibility that there will be more.

A Day In The Life of Colton

Because of Colton’s conditions, he is prone to seizures, but has never had one. His family is always on alert that he may have a seizure, or that his shunt may fail at any time. Colton receives an hour each of Physical, Occupational and Speech Therapy every week. He also has an array of specialists that he sees periodically. Colton is a very “go with the flow” kind of kid and adapts to all of these things very well. He is a very social toddler, and loves meeting new people and making them smile. Brain Conditions are tricky because they are invisible to the naked eye, and if you were to look at Colton, you would never know the things that he’s been through, or the things that he’s over come.

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Loving. Social. Warrior.

Colton has been through so much in his life and yet he is always smiling. He wakes up with a smile, and is constantly doing things to make others smile! Colton brings so much joy wherever he goes. At church he is known for how loving he is, as he’s always giving hugs and “booms” (Fist bumps) to anyone he meets. Things may be challenging for him, yet he takes things in strides and is always willing to try new things. He is obsessed with Sesame Street and can name every character of the show! His favorite song is the Itsy Bitsy Spider, and My God is so big. He loves cars, trucks and tractors! He Mom says he is truly her hero, and the biggest warrior she ever met. I could not agree more! Colton is such a special and amazing 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!


Beautifully Different – Owen

Beautifully Different

A Project Celebrating Differences and Triumphs

Owen is Beautifully Different

Meet Owen! Owen is a very special and amazing little boy! Owen’s main diagnosis is Ataxic Cerebral Palsy which is caused by trauma to the cerebellum in utero, during or after birth. This type of cerebral palsy is a developmental disorder that affects motor function in multiple domains. Owen has many of the classic characteristics of this type of CP; wide gait, uncoordinated and imprecise movements, hand tremors, speech delay, ADHD, encopresis and enuresis (incontinence), eye movement disorder, and issues with depth perception. Owen also has a heart condition called aortic arch hypolplasia. At almost 11, he is the size of an 8 year old and takes medication to help him gain weight (which will eventually help him grow). Along with the ADHD, Owen also has severe anxiety and social pragmatic skill difficulty. Owen is Beautifully Different!

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The Diagnosis

Around 8 weeks old, Owen was hospitalized for over a week due to a severe protein intolerance (required being put on a prescription formula, Neocate). He was on that formula until 18 months of age. While at the hospital, his parents learned of his heart condition and concerns for his low muscle tone. They were paired up with a team of specialists and upon returning home we began working with Help Me Grow – early intervention. ( and AMAZING resource for parents of special needs chlidren. Click here to learn more about it!)  We received the official diagnosis of ataxic cerebral palsy at the age of 20 months. Owen has had a couple of hospital stays- he had had a hernia repair surgery and surgery to tighten the muscles in his eyes. He has also had an abdominal hernia repaired.

Owen’s World

Owen is considered high functioning, but has very apparent differences when around his peers, especially in sports (gross motor activities), writing tasks, and unstructured social events. He understands that he has differences and that he has to work really hard at things that other kids can do easily. Owen loves people, but has a hard time making friends with kids his age. He does well with younger children and adults. Owen has been in Occupational therapy, Physical Therapy, and Speech therapy since 15 months of age. He also sees a wide variety of specialists that follow his care. Owen also participates in social skill groups and behavioral counseling. He has to miss a lot of school for management due to these appointments. As he has gotten older, he sees his specialists less frequently, which has been helpful in allowing him to try more extracurricular activities.

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Full of Personality. Sweet. Amazing.

I have known Owen for a few years now, and to look at him you would think he was a typical little boy! So handsome and has the most beautiful eyes and sparkling smile! Through all of Owen’s difficulties, he continues to surpass everyone’s expectations. He has such determination to overcome any challenge thrown at him. Owen absolutely loves everything about sports! He loves watching them, learning about them, keeping stats, and playing them. Owen is always willing to try new sports, to find the one that he is the best at. Owen is an incredible little boy and I am so happy to know him and his amazing family!

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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!