Today we ask you for support and to stand with Xiayna “Sunshine” Williams, as we embark on a tantalizing journey. Xiayna is far from a typical child; she is a phenomenal soul who despite all odds and opposition has continued to thrive. She continues to establish her place in this world despite being regarded as an individual who would not produce any quality of life; and who was also deemed as an entity medically approved to terminate in utero.
Born June 17th, 2007 during an emergency c-section; Xiayna arrived to unyielding earth with the brightest smile that traveled across the universe. Previous medical tests during utero denounced her ability to live as anything other than within a vegetative state or immediate mortality. Upon arrival medical personnel and more tests confirmed pessimistic prognosis. Everything from cerebral palsy, seizures, hydrocephalus, brain calcification, and a slew of other debilitating diagnosis were given. Ever since birth, a continuous flow of appointments, therapies, and hospital visits have become part of Xiayna’s life’s routine; yet Sunshine smiles on.
“Attitude IS Everything… You can rarely control what you get in life, but you are ultimately the deciding factor in how you choose to respond”- Jo’Vanna Marie Williams.
Sunshine’s life is encompassed by love and adventure. Although nonverbal, delayed, and restricted mobility; she does not miss a beat. Community interactions continuously aid Xiayna maintaining her high spirits. She is a renegade of the diagnosis’ that were meant to bind her. She has been featured in fashion shows, news papers, participates in curricular activities, and is a greeter at her church. Due continual progress within her complex diagnosis; Xiayna has been highlighted during various seminars around the country that provides further support and research within the medical community for other children.
Xiayna’s mom, Jo’ believes in equal opportunity and includes Xiayna in every aspect of life. Jo’ loves Xiayna unconditionally and the bond they have is unparallel. Discipline, self control, and perseverance are qualities that Xiayna has to abide by daily. Jo’ expectation is that Xiayna will be the greatest individual to the best of her ability. She does not define Xiayna’s ability, rather she facilitates and encourages opportunity for growth. Jo’s ideals are that any human being can be a productive member of society and trains Xiayna with that belief. The love of God is the foundation and strength of both of Xiayna and Jo.
“I can do all things through Christ who strengthens me”-Philippians 4:13
Xiayna humbly has had much success and victories throughout the years. Hard work, sacrifice, holistic lifestyles, and a loving community has aided in every accomplishment. Yet, there is one major battle to fight named spasticity. Spasticity is the demon that prevents Xiayna from going the entire distance. Imagine if every movement you make is associated with the feeling of excruciating cramps and severe stiffness in your limbs. If every step you took are on your toes and only had weak core muscles to support you upright. Last but not least, empathize of what it is like when you step, your legs painfully shake uncontrollably until you collapsed to the ground. Those are Xiayna’s reality of daily being trapped in her own body.
Xiayna has been selected as a candidate for Selective Dorsal Rhizotomy (SDR) by world renowned Professor of Neurosurgery & Neurosurgeon in Chief at St. Louis Children’s Hospital Dr. T.S. Parks. This surgery would remove Xiayna’s spasticity and would overall improve her quality of life. Xiayna is NOT a typical candidate for this procedure due her complex diagnosis/ conditions. The pros of undergoing SDR surgery out way the cons. It would prevent contractures and deformities, future surgeries, reduce medication intake; reduce secondary illness, increase her respiratory, circulatory, and organ functions. Sdr would remove her pain and allow her to increase her endurance. This surgery would allow Sunshine to be free.
Xiayna is no longer deemed as failure to thrive and is growing as a typical child. She is projected to clear 5’9. Unfortunately, if Xiayna does not receive more intervention for spasticity she will encounter complications and deteriorate. Currently, the only other option for treating spasticity is another surgery that places a pump in the abdomen and administers the drug baclofen to the spinal cord. This pump has many complications such as risk of infection, adverse reactions to medication, invasive pump maintenance, pump malfunction that may lead to withdrawal, spinal fluid leaking, and more.
SDR’s complications are associated with typical surgical complications. Paralysis of the bladder and legs that is associated with neurosurgical procedures. SDR’s most noted side effect is muscle weakness.
The road to recovery is extensive. It requires complete dedication and commitment. Post operative treatment mandates at least six months of 4-5 days of intensive therapy and a continuance after care therapy. Xiayna will have to retrain every muscle group in her body to function. She will essentially have to build herself from the ground up; but now she will be on a solid foundation with immeasurable possibilities. Unfortunately, these opportunities are unattainable without you. Due to out of network provider billing and insurance, Xiayna is not covered to receive all the treatments that are essential for her survival.
SDR procedure $35,045
Intensive Physical Therapy $7,800 per 3-week sessions; 20hrs per week
Physical Therapy $130 per hr
All encouragement and support is appreciated. If the only thing you have is a prayer and a smile to offer to aide us during this journey, we will gladly accept that too. Remain Encouraged and Inspired!
With Warm Regards,
Team Sunshine #journeytogether Romans 8:28
“Unity is strength. . . when there is teamwork and collaboration, wonderful things can be achieved.”