COTA for Zoraiz

Our Story

Zoraiz’s Story: A Miracle in Every Chapter

Zoraiz was born with an extremely rare inborn error of metabolism: Methylene Tetrahydrofolate Reductase (MTHFR) Deficiency with Homocystinuria. Only about 50 people in the entire world live with this disorder. When she entered this world, the doctors told me she might survive only six months.

But Zoraiz had her own plan.

She chose to stay.

She chose to fight.

And she chose to defy every expectation placed on her.

Early Challenges & Early Miracles

Because of her condition, Zoraiz developed hydrocephalus and needed brain surgery to place a shunt. Even with delays, she slowly began meeting her milestones. She attended school in a wheelchair, worked hard in her ID classroom, and received speech, OT, and PT therapy three times a day.

She was tube-fed through an NG tube, later requiring a G-tube and multiple shunt revisions. Yet, even with so many barriers, she kept surprising her medical team.

One of the biggest miracles came when she was 12 years old:

Zoraiz began walking independently.

Doctors called her “the miracle child.”

Her brain CT showed large ventricles with only a thin rim of gray matter, and they would say,

“No one would believe this is Zoraiz. A brain like this… you’d expect a child who cannot move at all.”

But Zoraiz always wrote her own story.

The Battle With Pancreatitis

In 2012, she developed severe abdominal pain and vomiting. MRI imaging showed pancreatic cysts and abnormal anatomy. She needed ERCP procedures, stents, and eventually J-tube feeding.

For years she cycled through hospitalizations — vomiting, pain, elevated labs — needing week-long admissions to rest her pancreas and restart feeds slowly.

2023: Pain Returns Stronger

Her symptoms intensified. Admissions increased to nearly every month. ERCPs revealed chronic calcific pancreatitis and a pancreatic stricture that could not be opened.

Doctors tried everything:

• Parenteral (IV) nutrition
• Continuous J-tube feeds
• Medications through G-tube
• Fentanyl patches

Nothing relieved her pain. She suffered a septic episode — one of the scariest moments of my life as a mother.

Where She Is Today

Because of the constant, debilitating pain, Zoraiz is now on:

• Morphine
• Diazepam
• Other comfort medications through hospice care

She is currently under the support of hospice, focusing on comfort and quality of life while we fight for the surgical option that could finally give her relief.

A Life-Saving Recommendation

Her GI team concluded that the only true path forward is:

Total Pancreatectomy with Autologous Islet Cell Transplant (TPAIT).

Insurance initially denied the surgery at Georgetown. After switching plans and waiting six long months, we finally received approval — a light at the end of a very long tunnel.

This surgery is her best chance at a life with less pain.

A Family Filled With Challenges — And Strength

Zoraiz is not fighting alone. Her siblings also face complex medical and developmental needs:

• Her sister has MTHFR homocystinuria, seizure disorder, and severe autism.
• Her brother lives with severe autism and ADHD, needing constant support and structure.

Our home revolves around medical care, therapies, compassion, and resilience. Every child depends deeply on the stability of the whole family — and Zoraiz’s pain affects all of us.

How You Can Help

We are preparing for a major, life-changing surgery. The medical expenses — hospital care, transport, equipment, medications, and long-term post-surgical needs — are overwhelming.

Through COTA, every donation in honor of Zoraiz helps with transplant-related costs.

Your support of COTA for Zoraiz helps ensure she receives the care she desperately needs while also helping stabilize our family during this difficult time.

Thank you for reading her story.

Thank you for believing in her miracle.

And thank you for helping us give Zoraiz the comfort, care, and hope she deserves.

Have a great day 

Thank you,

Zara 

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.