Dream Bedroom, Accessible Bathroom

Spinal Muscular Atrophy

With the spunk of Wonder Woman and the strength of Super Girl, she is a super hero to those who know her well and uses her miraculous powers to defy all odds. She is her mother’s beautiful princess, the apple of her father’s eye and has her siblings wrapped around her dainty magical finger. Zyah has a beautiful, inspired soul who does not let her disability slow her down a bit. For most one year olds, they are not only celebrating a full year of precious life, but also celebrating milestones like standing alone or taking their first steps. At this age, Zyah seemed to be just progressing slower; not ready to stand up alone and not ready to walk yet. That is when the fevers started. After three months of recurring fevers and no explanation, Zyah ended up with pneumonia and was admitted to the hospital. Shortly thereafter, she experienced a collapsed lung. Devastatingly, Zyah was then diagnosed with SMA, type 2. SMA or Spinal Muscular Atrophy Type 2, is a genetic neuromuscular disease that affects the voluntary muscle movement and lung muscles. It is rare, but is also the most common genetic cause of infant death. Doctors presented her parents with the unimaginable fact that this adored little girl may only live to 7, maybe 8 years old. Six years later, Zyah is now 7 and still going strong. Her daily medications and treatments consist of a CF Vest, cough assistance, suctioning, Bi-PAP and a g-tube for feedings. She can eat some things by mouth for pleasure or taste, but because she does aspirate which puts her at great risk for aspiration pneumonia her primary nutrition is received via the gastronomy tube. Zyah also uses a stander several times per week and has physical therapy twice per week. She has been hospitalized on countless occasions, spending more holidays at the hospital than at home. What is a simple cold to others lands Zyah in the ICU, sometimes requiring a ventilator. Have no fear, though, Zyah is strong willed and continues to fight like a champ. She doesn’t let her “disability” stop her from doing what she desires. She has been a cheerleader, gone roller skating, takes singing lessons and is a Girl Scout. She has also been in beauty pageants, winning a few trophies. SOARD gave Zyah a magnificent bedroom and bathroom makeover with style and spunk that matches her incredible personality. A room fit for a warrior princess but also the maturity of an old soul, this is just what Zyah got. You see, Zyah shows the strength of a warrior princess but is very wise beyond her years. Zyah taught us so much during the short four weeks of working on her project, you can achieve anything if you just work hard and are never afraid to ask questions! Zyah's reveal was so fit for a princess, people just kept showing up to show their support for this sweet, humble family. Zyah's mom is a nurse and the support of her nurse's community was something out of this world! Zyah also had support from some of our past families, which makes it that more special. As the saying goes, always stay humble and kind -- that's exactually what this family does! Welcome to the SOARD family!

Family Photos

Photography by Dinah Sutton Photography

Before Sunshine

Photography by Dinah Sutton Photography

After Sunshine

Photography by Dinah Sutton Photography

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Photography by Dinah Sutton Photography