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Tag bladder exstrophy

7 Mar

Treasure’s Story Continues

Treasure is now a joyful three-and-a-half year old and currently has no major health challenges. Although she has not been able to be seen in person in the clinic, A-BE-C has been able to care for her remotely through telemedicine.

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12 Nov

Alves to India

Late in the day at a makeshift ‘medical mission’ clinic in the Bahamas as the doors were closing for the day, a family hesitantly knocked on the door. Judging by the looks on their faces, the volunteer nurses knew they were desperate for help. Avles, an adorable five year old boy stood before them - they could smell him before they met him. Alves’ father, Lucner, out of desperation and faith asked if they would see his child, not really expecting they could do anything.

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6 Jul

Keep On Keeping On

We recently had the rare opportunity to get some words of wisdom from Australian, Tom Flood, who was born in 1930 with bladder exstrophy. In those days, very little was known about bladder exstrophy and no treatment options were available. His parents were told that Tom was not expected to survive and if he was not in pain, just to leave things as are. But Tom had other plans! 

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11 May

A-BE-C Partners with Physician Group to Raise over $500,000 to Aid India in Their Fight Against Covid

A-BE-C has teamed up with a group of physicians in a coordinated effort to send much needed oxygen concentrators to partner hospitals in major cities in India, to aid in their continued fight against Covid. India is experiencing the world's worst outbreak, with 400,000 new cases each day.

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24 Oct

2020 Back to School Virtual Conference!

Check out the video from our virtual back to school conference, where we discussed back to school concerns for BE kids and families, talk about Covid related issues, and provide tips for bathroom procedures.

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17 Jul

El milagro perfecto de Rosina

Rosina comparte la historia de su hija, Fátima, también conocida como "Mily", y su viaje con extrofia cloacal en el Children's Hospital Los Angeles.

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15 Jul

Rosina’s Perfect Miracle

Rosina shares the story of her daughter, Fatima aka “Mily”, and their journey with cloacal exstrophy at Children's Hospital Los Angeles.

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23 Jun

ARTICLE: Patient-reported outcomes in adult females with bladder exstrophy

An article based on a survey conducted in 2019 by Seattle Children's and A-BE-C regarding adult females with exstrophy and their long-term sexual, reproductive, and urinary outcomes has been published.

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22 Jun

The US-India Bladder Exstrophy Collaborative

Since 2009, a team of surgeons, anesthesiologists, social workers, and other healthcare providers from hospitals in India and the U.S. have worked together to help more children in Asia and Africa receive the complex surgery necessary to address bladder exstrophy.

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20 Jun

Family Finds Hope and Support at Seattle Children’s

Family shares their story and thankfulness for the A-BE-C community and the team at Seattle Children's.

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