Family twice needed perfect donor to 'Be The Match'

Summary

The Torres family's story highlights the importance of bone marrow donation and awareness through the National Marrow Donor Program, Be The Match. Both of their daughters, Adriana and Juliana, were diagnosed with Hurler syndrome, a rare genetic disorder. Adriana underwent an umbilical cord transplant, and Juliana recently received a bone marrow transplant from an unrelated donor. Their recovery has been challenging but inspiring. The family hopes to encourage others to join the Be The Match registry to save more lives, as thousands each year are unable to find a match.

Takeaways

• 👶 Juliana Torres, a 1-year-old, is recovering from a rough first year of life after being diagnosed with Hurler syndrome.
• 🧬 Hurler syndrome is a rare enzyme deficiency disorder that typically appears during childhood and can be life-threatening.
• 🏥 The Torres family traveled to All Children’s Hospital in St. Petersburg in hopes of saving Juliana’s life.
• 🩸 An unrelated donor provided a perfect bone marrow match for Juliana, and she is now on day 67 post-transplant, doing well but still wearing a mask for safety.
• 💪 This is the second time the Torres family has faced Hurler syndrome, as their older daughter Adriana was also diagnosed with the same disorder at 2.5 years old.
• 🧬 Both sisters inherited Hurler syndrome because both parents carry a recessive gene that passed the disorder onto them.
• 🧑‍⚕️ Adriana had an umbilical cord transplant four years ago, and she is now healthy and thriving.
• 🩺 Juliana recently had a bone marrow transplant, and she is already an outpatient and recovering well.
• 🙏 The Torres family hopes their story will inspire others to donate bone marrow and help save lives.
• 🏃‍♀️ Be the Match, a nonprofit organization, is hosting a Be the Match Be the One Run to raise awareness and grow the national bone marrow registry.

Q & A

What is the main focus of the health campaign mentioned in the script?

The main focus of the health campaign is bone marrow awareness and the importance of donating bone marrow.

What medical condition does Juliana Torres suffer from?

Juliana Torres suffers from Hurler syndrome, an enzyme deficiency disorder that can be deadly if left untreated.

How old was Juliana Torres when she was diagnosed with Hurler syndrome?

Juliana was diagnosed with Hurler syndrome when she was about four or five months old.

How did the Torres family try to save Juliana’s life?

The Torres family traveled from Fort Myers to All Children's Hospital in St. Petersburg, where Juliana received a bone marrow transplant from an unrelated donor.

What type of transplant did Juliana's sister Adriana undergo?

Adriana underwent an umbilical cord transplant when she was diagnosed with Hurler syndrome.

What is the relationship between the Torres sisters’ condition and their parents?

The Torres sisters both inherited Hurler syndrome, a genetic disorder caused by a recessive gene that both parents carry and pass on to their children.

How rare is it for two siblings to have Hurler syndrome?

It is extremely rare for two siblings to have Hurler syndrome, as both parents must carry and pass on the recessive gene for the disorder.

How is Juliana doing after her bone marrow transplant?

Juliana is currently in recovery and doing well, having passed day 67 post-transplant, although she still needs to wear a mask and avoid crowded places.

What organization operates the Be the Match registry?

The National Marrow Donor Program operates the Be the Match registry, a nonprofit organization that helps match donors with patients in need of bone marrow transplants.

What is the significance of the Be the Match Be the One Run event mentioned in the script?

The Be the Match Be the One Run event is held to raise awareness and encourage donations to build the bone marrow donor registry. The event is taking place on Sunday, April 1st, at Al Lopez Park in Tampa.