Meet Daniela: 2018 Family Advocacy Day Champion

Nicklaus_Children's_Hospital_Alvarez__Daniela.ver.2.jpgDaniela is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Daniela will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

On June 26, 2009 — her second birthday — Daniela was diagnosed with an atypical teratoid rhabdoid tumor (ATRT), a rare, aggressive and very malignant type of brain cancer.

To treat her cancer and prevent its return, Daniela has endured:

  • Brain surgeries
  • 60 weeks of aggressive chemotherapy
  • 3 months of radiation to her brain
  • Hundreds of MRIs and other imaging scans
  • Multiple visits to the Pediatric Intensive Care Unit
  • Quarantine from other kids her age — even her own sisters
  • Countless numbers of blood and lab tests

But through it all, Daniela has stayed strong.

The effects of Daniela’s cancer did not end after treatment. Two brain surgeries, the side effects of chemotherapy and radiation have all left Daniela with a number of serious and chronic medical issues. She has profound hearing loss, delayed physical growth, dental implants, problems with memory and attention, poor hand-eye coordination, poor balance, seizures, and other challenges — all resulting from the ATRT clinical trial protocol that saved her life.

However, now 10 years old, Daniela refuses to let these limitations slow her down. Daniela’s mother, Patricia, exults, “she always pushes herself forward and sets her goals high. She dreams of being a firefighter, an astronaut and a mother someday. She thrives when making new friends, attending church functions and spending time with her siblings and family.” 

The specialized care at Nicklaus Children’s Hospital has been crucial to Daniela’s success. The committed team of pediatric specialists includes experts on the nuances of children’s health care, and knew how to best treat Daniela. Nicklaus Children’s also provided an environment where Daniela felt comfortable. 

Patricia explains that without care at a children’s hospital, “she would have a very negative connotation for hospitals because a regular hospital does not usually cater to kids and families as a children’s one does.” 

For Daniela, the effects of pediatric cancer are life-long; nevertheless, she loves life and sees the good in everyone. You can find her playing at the park, and swimming at her local pool. She is adventurous and enjoys meeting and talking with new people. But most of all, she is excited about her new role as an advocate for children’s health.

Join us in welcoming Daniela to 2018 Family Advocacy Day!

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