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Tag: In Progress

Marie & Alondra

Written by Clareece Cunningham on . Posted in Crosby Design Group, Meet the Kids.

  • 17 Years Old

  • Diastrophic Dysplasia & Scoliosis

Marie was paralyzed at 8 months old and then adopted by mom Michele at age one. She’s had a life of ups and downs; like most people. Her disability caused scoliosis which meant over 20 surgeries for back rods, lots of days of school missed and then she developed a seizure disorder at age 10. Her seizures are not predictable, so she cannot spend much time alone as she needs an adult to be there in case she has a seizure. 

Marie is a fabulous athlete. She plays basketball for Blaze sports all girls/women team and wheelchair tennis. She is very kind and helpful to others; always willing to teach her classmates math or lend a hand around the house. She is currently studying children’s healthcare in college. 

The home her mom has purchased will be where Marie learns to live independently. This venture will tremendously help her gain the necessary independence that all young adults long for; without the remodel, Marie cannot reach the next milestone in her life: learning how to live in her own home with just a little help and eventually be totally independent.

“Marie & Alondra will be neighbors; living in the same duplex and equally working towards more independent living.”

In her current living situation, Alondra has to be carried through the home by her parents because the hallways aren’t wide enough for her wheelchair. This keeps her from being independent, but with an accessible space she can do most things on her own.

For seven years, Alondra has lived in a home inaccessible to her needs. She has had many back surgeries and is in physical therapy to learn how to manage life in a power wheelchair. She plans on living with her parents for many years to come, so a home that is accessible to her will be life-changing. Alondra is applying to a technical school to be a medical assistant. Her favorite color is burgundy, and she loves lively Spanish music.

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Photography by Marcelino Aguilar

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Naji

Written by Clareece Cunningham on . Posted in Meet the Kids.

  • 19 Years Old

  • T4 to L5 Spinal Injury

Naji is a nineteen-year-old young man, born on April 5, 2004 with a congenital heart defect that necessitated four open heart surgeries. His plans after high school were to pursue college degrees in both finance and law. Unfortunately, his plans were put on hold after sustaining a spinal cord injury in September 2022.

The injury Naji sustained in September 2022 caused him to become paraplegic. He was hospitalized for several months after his surgery for both recovery and extensive in-patient rehabilitation therapy. The nature of his injury by definition involves an extremely long recovery, including extensive physical and occupational therapy, lots of dedication and hard work to his treatment plan. Other hurdles he is having to navigate in addition to his paralysis are: the management of constant pain, neurogenic bowels, neurogenic bladder, emotional and psychological stress and anxiety.

“He is dedicated to … pursuing a career that would allow him to become a productive member of society – to give back what society has graciously given him.”

Naji is an extremely intelligent young man, as well as being very sensitive and caring. He has a unique sense of humor, loves animals and in fact has two dogs and a kitten: Oreo, Tango and Bear. He is dedicated to achieving recovery, going to college and pursuing a career that would allow him to become a productive member of society, and to give back what society has graciously given him.

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Photography by Niki Murphy

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Emery

Written by Clareece Cunningham on . Posted in Meet the Kids.

  • 6 Years Old

  • Rubinstein-Taybi Syndrome, Agenesis of the Corpus Callosum, Chiari Type 1, Severe Photophobia & Tethered Spinal Cord

They call Emery their ray of sunshine. She radiates joy, is extremely determined and spunky, loves music, spinning, and is always up for an adventure. Her favorite outing is going to Home Depot and spending her time in the ceiling fan aisle which is one of her absolute favorite items since birth. A day with Emery is never boring. From her eclectic music taste ranging all the way from “Carry On My Wayward Son” by Kansas, The Piano Guys, to Wheels on the Bus, she will keep you on your toes and provide you with loads of laughter. 

“The way she sparks joy even in the toughest circumstances is one of the many things her family adores about her.”

Emery was born with Rubinstein-Taybi Syndrome, a rare genetic syndrome that affects every process and organ system in the body in different ways, Agenesis of the Corpus Callosum, which means the bridge between the right and left side of the brain is missing, chiari type one, a malformation of the skull that caused the brain to protrude down into the brain stem, severe photophobia, and a tethered spinal cord. All of these diagnoses branch off into more diagnoses that make her a very complex and rare little girl. Their day to day life is filled with medicines, therapies, appointments, medical trips to Cincinnati, and facing the unknown head on. But their days are also filled with deep abounding joy, laughs, family adventures, and fierce love. So many people tell them that Emery is so lucky to have them as parents but they always say that they are the lucky ones to be given such a gift as the privilege to love her.

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Photography by Donna Hagin

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