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April 29, 2018 Beautifully Different, Children 0

Beautifully Different – Henley

Beautifully Different

A Project Celebrating Differences and Triumphs

Henley is Beautifully Different

Meet sweet Henley! Henley is an incredible two year old girl with a rare genetic disorder, Prader-Willi syndrome. Prader-Willi Syndrome (PWS) is a complex genetic disorder caused by a loss of genetic material on the paternal copy of chromosome 15. PWS affects approximately 1 in 15,000 people and occurs randomly, affecting males and females and people of all races and ethnicities equally. Nearly every system in the body is affected by PWS: hormones, body composition, muscle tone, behavior, temperature regulation, cognition and learning, pain tolerance, sleep patterns, but the hallmark symptom is hyperphagia, or extreme, constant hunger. .

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Every aspect of Henley’s life if affected by PWS. Her low muscle tone means she has to work twice as hard as her peers to complete the same activities. Her growth is also affected. People with PWS are deficient in growth hormone. She has to have a  Human Growth Hormone shot every night. Individuals who have PWS also have trouble controlling their emotions. Henley seems to have extreme emotions no matter the situation (happy, sad, loving, etc.).

The biggest challenge is her diet. Although she has not yet reached the extreme hunger phase, individuals with PWS have a slower metabolism as well, only 60% of a typical persons metabolism. This means we must follow a strict diet. Henley does not get any candy, treats, juice, anything with added sugar, refined grain. She is on a diet that is low in carbohydrates and high in fat. She eats a lot of whole foods, nothing processed, no sugar or sugar substitutes, only complex carbs. Henley also has to adhere to a strict schedule. Eventually, when she exhibits extreme hunger, her parents will not be able to allow her snacks or meals outside of designated times.

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Henley is a warrior. She is inspiring. She is determined.

Henley has never known any other life than the one she’s been dealt. Her demeanor, her persistence and her drive is uncanny. She lives with so much intention. For all of the hurdles in her path, she has overcome one after another. She works extremely hard at her goals. She loves her life and loves hard. She’s happy, smart, and defying all expectations. Although  the road ahead of her may be difficult bumpy, her family is confident that Henley will manage all that she encounters with grace and grit.

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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!


April 23, 2018 Beautifully Different, Children 0

Beautifully Different – Madelyn

Beautifully Different

A Project Celebrating Differences and Triumphs

Madelyn is Beautifully Different

Madelyn is an amazing little girl. Before she was even born, she suffered a stroke. Very often, parents of babies who suffer a perinatal stroke don’t know about it until months after they are born. In Madelyn’s case, they started noticing around 4 months of age that she would only grab objects with her left hand. After a talk with their pediatrician, they were referred to a neurologist. Madelyn had an MRI which showed that she suffered a significant stroke on the left half of her brain. Their neurologist said that if this would have happened to an adult, they would not be able to walk or talk. Madelyn has hemiplegia due to her stroke. Hemiplegia is weakness to one side of the body. Since Madelyn’s stroke occurred in her left part of her brain there for she is has weakness to her right side of her body. Her hand is mainly affected but also has weakness in her leg/ foot. She wears an AFO (ankle-foot orthosis) to help her foot be stabilized when she walks.

Madelyn is Beautifully Different!

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Madelyn does an amazing job adapting and making the best of her situation. When you only have full use of one hand, the world can be challenging, and can make you feel like the world was made made for two-handers. Madelyn does everything one handed with her right hand as her “helper hand.” She has an incredibly sunny disposition and is an absolute joy to be around! Her smile and vibrant personality light up the room! She is such an inspirational little girl!

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Creative. Determined. Reserved.

Madelyn is your typical 8 year old girl! Sweet, sassy, and full of energy and spunk! She loves music and cheerleading. Madelyn loves to be around her friends, and she loves school! She is in girl scouts and loves being active with her troop! Though she will face struggles in her life due to her hemiplegia, I know she will not let it slow her down! I am so grateful to have had the opportunity to meet such an amazing little person!

Kathy Rogers Photography_Beautifully Different_Children Photographer in Amherst_Little girl _hemiplegia_stroke survivor

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


April 16, 2018 Beautifully Different, Children 3

Beautifully Different – Cameryn

Beautifully Different

A Project Celebrating Differences and Triumphs

Cameryn is Beautifully Different

This gorgeous little lady is the amazing Cameryn! Cameryn has Trisomy 21. The term trisomy is used to describe the presence of three chromosomes, rather than the usual matched pair of chromosomes. Cameryn was born with three #21 chromosomes. Trisomy 21 is also known as Down syndrome.  Cameryn also has a few heart defects that include a murmur and a Ventricular Septal Defect (VSD). The VSD is a small hole in one of her ventricles that hasn’t closed all the way, she’s been closely followed by cardiology since she was born. Around age 3 she was also diagnosed with hypothyroidism and put on daily medication to control her levels. Cameryn is so Beautifully Different!

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I asked Cameryn’s Mom to fill out a brief questionnaire about Cameryn, so I could do the best possible job telling her story. I was so moved and could feel the love and strength that was put in to every single answer, I am just going to cut and paste her Mom’s words, because there is no way I could do a better job at telling the world how strong and amazing Cameryn is.

There were suspicions when I was pregnant with her. They found some things on an ultrasound that pointed to DS. They sent me for testing and high tech ultrasounds. The specialists convinced me I was too young and not to worry. I didn’t. I knew right then, no matter what she was ours and would be so loved. This was the daughter I waited for after two boys! Fast forward… Then, the birth happened so fast! I was admitted to the hospital and she came less than 2 hours later! My husband was beaming, he was calling all the family. Calling in his coworkers to come meet her! The pediatrician came in while he was out on the phone and told me she suspects Cameryn has Down Syndrome, then she walked out and left me to tell my husband. Alone. I knew as soon as they pulled her out and set her on me that she was different, I felt it. I knew what that doctor was gonna tell me before she said it. I wasn’t shocked, I wasn’t sad. She was mine and she was gorgeous.
When Cameryn was born, I hemorrhaged pretty bad and was rushed off to the operating room to stop the bleeding. That’s when Cameryn took a turn for the worse. When I went Into surgery she was peaceful in her bassinet next to her daddy. She turned blue right after they took me away. She wasn’t breathing well and she was experiencing pulmonary hypertension. She was transferred to a level 2 nursery within the tiny naval hospital where she was born. She had to be transported to a bigger hospital more equipped to deal with her battle. The kicker was, my husband had to arrange her transport. See, he worked in that naval hospital as the transport coordinator for the ED. I wasnt in good shape and now she wasnt either. He was so torn, I said go with HER. The hospital they took her to was 2.5 hours away. They said she’d likely need open heart surgery very soon. Thats all I knew. With the complications I had, they wouldn’t discharge me to be with her for 2 days. Her doctors prepared us for the worst. Open heart surgery and a lengthy hospital stay. Said she wouldn’t be home by Christmas. She was born 11-23 sent to the NICU that same day. She was in the NICU for 10 days. Around day 4 her other heart defect she had at birth (ASD) had miraculously closed by itself! So, no surgery yet! They said we had to work on wearing her off of oxygen so she could breath on her own…on day 8 they had to run some test so we left for a few hours to Christmas shop for her big brothers. When we came back, she had pulled her nasal cannula out and was breathing on her own at 100%. We went home December 5th! No more hospital. We were SO lucky and thankful every day that she is a miracle. She’s still followed closely by cardiology to monitor her VSD.
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Fearless. Determined. Amazing.

Cameryn was put in to early intervention at 3 months old, early intervention is very important, and has helped Cameryn achieve so much! She has smashed every single statistic that doctors said she wouldn’t. Cameryn is in school with typical peers and takes dance classes with typical peers. She does tap, jazz and ballet and has her 3rd recital in June! To know Cameryn, is to love her. She lights up a room! When she arrived at the studio, I could tell she was something special, she stole my heart right from the first second she smile at me. I could also see the tremendous amount of love her Mom has for her. In her Mom’s words-  “I feel like I won the lottery having her as my daughter. I will fight for her every step of the way.”

Kathy Rogers Photography_Beautifully Different_Children Photographer in Amherst_Little girl_Down Syndrome

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


April 13, 2018 Beautifully Different, Children 3

Beautifully Different – Olivia

Beautifully Different

A Project Celebrating Differences and Triumphs

Olivia is Beautifully Different

I am so excited to introduce you to this amazing girl! Olivia! Olivia is a super sweet and spunky 4 year old girl who was born with a malformation of the cerebellum. In her specific case, the right side of her brain is smaller than the left side. She also has Esotropia (which is is a form of strabismus in which one or both eyes turns inward. The condition can be constantly present, or occur intermittently, and can give the affected individual a “cross-eyed” appearance). From the age of 6 months until 3 years old Olivia had to wear a patch over one of her eyes everyday. She underwent surgery at 6 months old to correct it. She also has Apraxia, Ataxia, Sensory Processing Disorder and developmental delays. Olivia is most definitely Beautifully Different!

As with many neurological conditions, Olivia’s differences were not diagnosed until after her birth, as they are not always apparent until much later. Her parents took her to have her 3 month photographs taken, and that’s when they noticed her eyes were a little different from most babies. Soon after that she was received her Esotropia diagnosis. She was about a year and a half old when her family learned about the rest of her differences. Her Mom was in a parent group, and noticed that Olivia wasn’t hitting her milestones at the “normal” time, as the other children were.

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Olivia’s differences have affected her daily life. At first it was really hard for Olivia to play with other kids her own age. She had a hard time communicating with them because of her speech delay. Her eye sight caused issues with playground equipment and the speed at which other children move. She couldn’t sit at the table for a long period of time for eating purposes. It was very apparent when I met Olivia that she doesn’t let anything stand it her way! She strolled in to the studio with excitement and confidence. She was so ready for her photo session, and she totally rocked it!

Kathy Rogers Photography_Beautifully Different_Children Photographer in Amherst_Little girl Esotropia

Olivia is many things. Above all else, she is an inspiration!

According to Olivia’s Mom, They are not teaching Olivia as much about this world as she is teaching them. Her nickname is “The Polite Police”! She kindly reminds people to say please, thank you and excuse me. She loves those that are hard to love, which is such an admirable quality! From the day she learned about Disney and Princesses she has had a love of Princess Jasmine. She plays Magic Carpet and she wears her Princess dress. If you ask her who her best friend is she will tell you it’s her Papa. Her Grandfather and her have an amazing bond.

Olivia loves to sing, dance and have pillow fights. She always wants to be on the go whether it’s to the Zoo, the library, to visit her family, or camping! She just wants to be busy. When she grows up she wants to be an “Animal Doctor.” She spends her days being an amazing big sister and helping to clap out words, play teacher, or help potty train her 2 year old little brother. She has this bubbly personality that is contagious and a smile that will melt your heart. In her Mom’s own words. “We could not be more proud of our girl”.

Kathy Rogers Photography_Beautifully Different_Children Photographer in Amherst_Little girl Esotropia

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


Beautifully Different – Mia

Beautifully Different

A Project Celebrating Differences and Triumphs

Mia is Beautifully Different

Meet sweet Mia. A beautiful and sweet 9 year old girl who suffers from Cerebral Palsy. Cerebral palsy is an umbrella term that refers to a group of disorders affecting a person’s ability to move. This condition affects people in different ways and can affect body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. Mia is nonverbal and developmentally delayed. Despite her differences, she a strong girl who has been through so much! Mia has had 2 major surgeries, the placement of a gastronomy tube (G-tube) at two years old, and and tracheotomy at five years old. Mia has had numerous hospital stays since she was two weeks old (when turned blue in her crib). Mia is the definition of Beautifully Different!

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Every area of Mia’s life is affected by her diagnosis. She is home schooled because of her weakened immune system. She requires round the clock care, and is dependent on her parents for her every need. Mia is a very lucky little girl, not only does she have two wonderful parents to care for her and provide her what she needs, she also has three siblings who love her and help care for her. A strong support system is so very important, and Mia has an amazing one!

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Mia is beautiful, strong, and smart!

Mia’s Mom describes her as a little ham and she definitely knows shes cute! She is so smart she’s learning different ways to communicate her needs as she grows. Mia has been through so much, but she continues to persevere and remain a happy little girl. She is an inspiration and I am so honored to have met her and her family!

Kathy Rogers Photography_Beautifully Different_Children Photographer in Amherst_Little girl _cerebral palsy

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