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Hudson

  • 6 Years Old

  • Gaucher Disease Type 2

Hudson is the youngest of 3 children, following his sister Olivia (8) and brother Gavin (10). He was born a happy healthy baby. Around 4 months of age, Hudson’s parents started noticing some differences in him, such as weight loss, difficulty nursing, and choking. After a few significant episodes Hudson was hospitalized around 6 months of age for further investigation. After a 16 day stay in the hospital and lots of testing Hudson was sent home with no answers and told to follow up with genetics. At the young age of 9 months old, on July 2nd, 2018, Hudson’s mom Nichole received the phone call that would forever alter the life their family had once dreamed of. Hudson was diagnosed with a rare, incurable, terminal, genetic disease, Gauchers Disease 2. They were told to put Hudson on hospice, that he would have no quality of life, never walk, talk, or live past the age of 2. Nichole’s response to them….. “but God”.

You’ve never had a hug ‘till you’ve had a Huddy hug!”

Hudson is now an amazing 5 year old who is living his BEST life! His family has and will continue to go to the ends of the earth for Hudson and his siblings. For the past 4 years they have made the drive to D.C. every 3 to 6 months for Hudson’s geneticist who is the only one in the US willing to give him a chance at life! In fact, Hudson is now being followed by geneticists all over the world as he is re-writing the books and making a way for all the children to come. 

Hudson is a very social kid, who thinks his siblings have hung the moon. He loves sports (football, basketball, and baseball), movies (Toy Story is his favorite), and has a smile that lights up his family’s world! He’s also known to give the BEST hugs. You’ve never had a hug ‘till you’ve had a Huddy hug! 

Unfortunately, Hudson is very susceptible to viruses that have kept him in the hospital ICU for more than half of his life. Because of this, they have had to keep Hudson confined within the walls of their home, limiting his exposure to the outside world. Sunshine on a Ranney Day is honored to bring light and joy into the walls that surround Hudson to help him continue living his BEST life!

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Photography by Vicki Alsup Photography

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István

  • 12 Years Old

  • Cerebral Palsy, Hearing Loss, Hip Dysplasia, Chronic Lung Disease & Global Developmental Delays

István had a traumatic beginning, being born a micro-preemie at 25 weeks gestation. Only weighing 1 lb, 6 oz, he fought hard to live. Being a micro-preemie comes with so many challenges – it seems like every decision a parent makes to ensure the baby’s survival comes with a set of lifelong effects. For instance, István contracted MRSA in the hospital (which required broad-spectrum antibiotics) and was on a ventilator for months. One or both of these life-saving measures is more than likely responsible for his unilateral hearing loss. István also has hip dysplasia and cerebral palsy, among other medical challenges.

“István’s blissful character proves that an extraordinary beginning does not determine your life’s path.”

Nonetheless, István does not allow any of his diagnoses to hinder who he is and who he wants to be. He is a very joyful and fun child, always finding a joke to make you laugh or spouting random history facts that remind you of your middle school history class that you probably loathed. In his free time, István dreams of being a history teacher with an RV, so he can enjoy random camping trips across the US. István is an avid reader – reading mostly history books about World War II, the American Revolution, and Ancient Rome. As a homeschooler, TV time is limited in their household. However, when István is offered time to watch television, he loves watching the History Channel, documentaries, and movies in black and white. István’s blissful character proves that an extraordinary beginning does not determine your life’s path.

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Photography by Nicole Bryant

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Liam

  • 16 Years Old

  • Duchenne Muscular Dystrophy

Liam is a funny and artistic 16-year-old living with Duchenne Muscular Dystrophy. DMD is a fatal, genetic disorder marked by progressive muscle loss due to missing exons within his DNA that produces a necessary protein. He began using a wheelchair for long distances when he was eight and lost the ability to stand and walk at 12. Showering and other activities of daily living are very difficult for him now.

A typical weekend will find him and his siblings in one game room at their stations off on an epic adventure together!”

He is an epic gamer. His gaming PC allows him to interact with friends and family, near and far, within a level virtual playing field. A typical weekend will find him and his siblings in one game room at their stations off on an epic adventure together! Liam also uses creativity to explore his thoughts and feelings. He will often say “Can I have my art stuff?” so he can draw while he watches his favorite YouTubers, Ten Hundred, Jazza, and Ace of Clay. He has multiple shelves holding dozens of sketchbooks.

One of the greatest challenges caused by DMD is that his bathroom is difficult to navigate. Liam used to love taking long, hot showers to relieve the stresses of his day and the ache in his weakened muscles. When he lost the ability to stand, he lost the ability to shower comfortably. What was once a joy has become painful, both physically and emotionally. Sunshine on a Ranney Day is looking forward to creating a space that will bring back some of that relief while showering, as well as tailoring it to Liam specifically!

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Photography by Kelley Wenzel

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Oakley

  • 9 Years Old

  • Spina Bifida & Hydrocephalus

Oakley was born in China in March of 2014. She was found in a baby box, and taken to the orphanage. Oakley has Spina bifida, and this is likely the reason her biological parents were unable to care for her as best as she needed. Her medical file looked really complex and scary, but the moment her family saw her picture, none of it mattered, whatever it looked like. They began the process to adopt Oakley when she was about a year and a half old, and finalized the process just before she turned two. 

Because of her Spina bifida, Oakley is paralyzed mid thigh down. She was also born with hydrocephalus and tethered cord syndrome that required surgery on her spine. Oakley uses a wheelchair but when she is at home, she likes to be out of her chair more than when she is at other places, so she will scoot around using her arms. She has some seriously strong arms! She can show you how to do a pull up or two under the table! And there is really nothing she can’t figure out a way to make work where she needs to. 

Oakley is the happiest, most joyful, hilarious child you will ever meet. She has no cognitive delays, and her sense of humor is on point. She is sharp. So smart. Her family likes to say she is 8 going on 22. She seriously runs the ship. She keeps everyone in the house in order, and I am pretty sure she does the same at school. She is a social butterfly, and every kid loves her. You would never know in her tiny little life that she had ever dealt with anything. She’s the one who reminds her family to be grateful, to not forget what they have, and to find the joy even where it seems it shouldn’t be. 

“You would never know in her tiny little life that she had ever dealt with anything.”

For her, a wheelchair accessible bathroom or a ramp will mean the world. Currently, they carry her in and out of the house to and from the van when they leave and come home. A new bathroom ahead of beginning her new bowel management process will be such a sweet step towards making her more independent and giving her somewhere private that she would actually enjoy being in during this process every night. She is also starting to get heavier as she is getting older, so this makeover will make the bathroom process much easier for her family, as well. But she finds such joy in such little things, this would truly make her world. She longs to be independent, but never complains about not feeling completely so. She is truly sunshine on a rainy day. She radiates joy like no other child. Her laughter is infectious. Her knock knock jokes are no joke. They’re the real deal. She is peace, and love. The no nonsense, no fuss attitude she has is contagious, and it changes everybody else’s environment. Her family is so much better because she is here.

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Photography by Hales Photo

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Peyton

  • 7 Years Old

  • Cerebral Palsy, Hydrocephalus, Epilepsy

In 2015, Crystal gave birth to twins Peyton and Taylor at 26 weeks. Both only weighed a little over a pound a piece! Taylor had a brain bleed and Peyton suffered bilateral brain bleeds grade 3 and 4. After both came down with hydrocephalus, the girls got a VP shunt to help drain extra cerebrospinal fluid from the brain. All of this resulted in 3 months in the NICU! For the first year of their lives afterward, all seemed normal until they noticed Peyton was ignoring her right hand. They soon began early interventions and before long Peyton was diagnosed with cerebral palsy, affecting the right side of her body. She worked super hard in therapies and was able to take her first steps at 3 years old! Since then, Peyton began having seizures and now has the diagnosis of focal epilepsy as well.

Despite everything she has gone through, she is the sweetest, happiest girl!

Despite everything she has gone through, she is the sweetest, happiest girl! In June of 2022 she underwent a surgery called selective dorsal rhizotomy at Children’s Healthcare of Atlanta. This surgery was intended to relieve some of her symptoms of cerebral palsy and hopefully help her stay mobile and gain more skills. Peyton spent 30 days in the rehab facility at the hospital, working through intensive physical therapy. Even though this surgery requires a lot out of Peyton for the first year post-op, she has stayed so joyful and determined! Her hard work of relearning how to walk again paid off when she took her first independent steps again a week before Halloween. She attends intensive physical therapy 5 days a week and is making great strides towards a full recovery! She is truly my hero,” – Peyton’s mom, Crystal.

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Photography by Carrie Birchfield

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