Bleu's Cystic Fibrosis Fight

On December 4th, exactly two months after being placed on the lung transplant list, Bleu Scott received an early Christmas present – a special phone call. The doctors called to tell Bleu and her mother, Amber, that they have received a perfect match. With no time to let the information sink in, Bleu and Amber headed straight to Lucile Packard Children’s Hospital near Stanford University to prepare for the surgery.

Bleu was born on April 24, 2000 in beautiful Huntington Beach, CA aka “Surf City”.   Like many generations before her, growing up in Huntington Beach meant sun filled days at the beach spent surfing, walking the pier, and her favorite pastime, watching the sunsets.
Bleu was diagnosed with a rare genetic disease known as Cystic Fibrosis, “CF”, soon after birth. Currently, there is NO cure for CF, but many ways to fight it. 

CF is a disease that mainly affects the lungs, but also the digestive system and other organs. Bleu and others with CF have described it as having to breathe through a straw that is clogged 24 hours a day. Imagine going about your daily life and struggling to just breathe?  She has that feeling every single day, making it difficult to do the simplest tasks that most of us take for granted.  On a daily basis, Bleu does several breathing treatments, takes dozens of prescriptions, frequently checks her blood sugar levels due to her CF induced diabetes, and carries an oxygen tank everywhere she goes.

In 2013, at age 13, Bleu’s health began rapidly deteriorating. Her doctors at Long Beach Memorial suggested she go to Northern California to Stanford, the ONLY hospital on the west coast that does pediatric lung transplants. Realistically, that seemed like the best and only option, so Bleu went to Stanford and was evaluated by a doctor that specializes in lung transplants. She recommended a new treatment plan in an effort to improve her health and postpone the necessity for a lung transplant as long as possible.

Over the next four years Bleu and her family made frequent trips by car and plane to Stanford, approximately 400 miles away from Bleu’s hometown. She spent weeks at a time in the hospital being treated at Stanford.Unfortunately, earlier this year, Bleu’s health began to quickly deteriorate once again.  Bleu was told she had less than two years to live if she didn’t receive a double lung transplant. In September 2017, Bleu was re-evaluated for a transplant and on October 4th she was placed on the national organ donor registry.

This is where it gets even more complicated. Being on the transplant list, meant Bleu had to be no further than four hours away from Stanford and her health had deteriorated so badly she could no longer fly.  This required Bleu and her mother, Amber, to relocate to Northern California at the Ronald McDonald House close to the hospital. They had to be on-call 24/7 with no timeframe as to when they might get “the call”. 

Having just undergone the double lung transplant this past week, Bleu is in ICU and will transition to acute care for 2-3 weeks depending on progress.  After that she will have to stay at the Ronald McDonald house for another three months minimum during the initial recovery process.  During this time Amber will be by her side and unable to work while Bleu is closely monitored by her medical team at Stanford.

Unfortunately, this fight against CF will be an ongoing battle
and although they have an excellent insurance plan, the financial hardship they have already experienced and will continue to experience throughout this journey is enormous.   Bleu and her family are forever grateful for the continued support we have received since the very beginning of this fight. Whether it was a surprise visit, thoughtful text message, social media post, prayer, or financial donation we truly want to say thank you.To the anonymous donor’s family, there are no words to express our gratitude for giving Bleu a second chance at life. Having a healthy set of lungs is a ginormous step towards winning this fight, and for that, our family couldn’t be more appreciative. The donor’s family is constantly in our thoughts and prayers.

If a financial donation isn’t an option for you, please consider sharing this on your social media pages to help spread the word.  A quick ‘share’ can go a very, very long way. Once again, thank you so much for being a part of Bleu’s Crew." We’re going to win this fight, and we’re going to win it together!

Bleu post transplant.

Bleu's first walk after the double lung transplant.

Bleu is blessed with amazing friends!

Bleu and Sidney in the hospital way back when.

Bleu and Sidney in the hospital post transplant.

Bleu is a self proclaimed bubble blowing champion!

Bleu's dream trip to visit Kauai and swim with the turtles in 2014.

Bleu on the beach in Poipu, Kauai 2014.

Bleu and her mom, Amber, in San Francisco pre-transplant.

Bleu with her mom (Amber),  her sister (Paisley), and brother (Dane).

Bleu and her dad (Scott) and his left foot in the hospital before the transplant.

Bleu with her cousin (Ashton), and brother (Dane).

Bleu pre-transplant in San Francisco blowing bubbles with her cousin (Ryan).

































  • Anonymous 
    • $3,500 
    • 13 mos
  • Anonymous 
    • $3,500 
    • 23 mos
  • Steve Bevington 
    • $100 
    • 32 mos
  • Susan Torres 
    • $30 
    • 38 mos
  • Anonymous 
    • $100 
    • 38 mos
See all

Organizer and beneficiary

Ryan Perez 
Organizer
Thousand Oaks, CA
Amber Scott 
Beneficiary
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