Hello everyone! This is the story of our beautiful baby girl, Bricita. Bricita's journey began in January 2019, where she raised concern that she was not feeling well. At times, she struggled to get out of her car and she would express her discomfort in her abdomen. In February 2019, Bricita could no longer tolerate the pain and desperately asked her mom to take her to the hospital. For her hospital stay in Loma Linda University Medical Center, doctors rushed to figure out what was medically wrong with Bricita. Two months had gone by and there were still no answers for Bricita or her family. Bricita spent her twenty-second birthday in the hospital and missed her only sister's wedding. In April 2019, doctors were finally able to tell Bricita and her family what was wrong; she, in fact, had HLH.
On the week of June 2, 2019, Bricita was ready and determined to go back home to get back to her normal, wild, and freeing life. She was pushing herself to stand up on her own, to eat on her own, to do her life on her own. Unfortunately, on June 7, 2019, we all got the call that Bricita had to undergo emergency surgery. She was expected to be conscious within the next twenty-four hours after her surgery, but she never came back. On June 10, 2019, our family had to make the hardest decision of our lives and say our final goodbyes to Bricita before removing her off of life support.
We miss her every single day. Not a day goes by where we don't think about her. She had the most bright, bubbly personality that we wish everyone could experience for themselves. We feel her presence everywhere we go. We still talk to her and sing to her.
After Bricita's passing, we felt like there was more we could do for the HLH and Histiocytosis community, so we felt in our hearts that we should start a nonprofit in Bricita's honor. Four days after what would have been Bricita's twenty-third birthday, we were surprised with the news that it was official, and Bricita's Pinky Promise Foundation was a dream come true. With this amazing opportunity, we aim to help members of the HLH community who are in need of financial help.
The members of Bricita's Pinky Promise Foundation will all be participating in the 5k to Fight Histio to help raise donations for such an amazing HLH foundation, Liam's Lighthouse Foundation. We thank Liam's Lighthouse Foundation for making it possible for everyone to be together in spirit for the 5K and maintaining the safety of the community during the pandemic. We would also like to give a HUGE shout-out to Eric's Journey Foundation for guiding us through the HLH ropes!
Regardless of the outcome, we are just happy to take part in this event and help raise donations for a much-needed cause. We hope you all join our team for the 5k and that share your support by donating. We love you and hope you join us on the 5k.
To learn more about Bricita’s journey and her family’s navigation after Bricita’s loss, please follow our platforms (IG: @bricitaspinkypromise, Facebook: @Bricita’s Pinky PromiseFoundation, Twitter: @bricitasbppf, Website: www.bricitaspromise.org)
What is the 5K to Fight Histio?
The 5K to Fight Histio takes place each year at Hudson River Park in New York City. It started with under 200 registrants in 2013 after Liam's Lighthouse Foundation and its supporters wanted to expand their outreach and awareness during the time they spent together in New York City. In recent years, we reached over 510 registrants prior to race day! This 5K helps families from around the world gather together for a cause they hold close to their hearts while raising awareness and much-needed funds for Histiocytosis at leading researching hospitals in the US.
Who’s ready for the 2021 5K To Fight Histio!
Join us virtually once again this year by registering your team and fundraising to support ground-breaking research! We are pleased to announce that proceeds from the event will go to help fund research initiatives at Cincinnati Children's Hospital (for LCH) and St. Jude's Children's Hospital (for HLH).
HLHRUXO: Use of a Response-Adapted Ruxolitinib-containing Regimen for the Treatment of Hemophagocytic Lymphohistiocytosis run by Dr. Kim Nichols lab at St. Jude’s Children’s Research Hospital. This trial is based on our basic laboratory research and aims to test the efficacy of a new type of drug called a JAK inhibitor for children with HLH. JAK inhibitors suppress the pro-inflammatory effects of cytokines, and in so doing, they decrease the manifestations of HLH. Although we have some support from industry, we need more funding in order to complete the trial and carry out studies to better understand whether and how the JAK inhibitor mediates its effects in patients with HLH. For more details about this trial, please go HERE.
HISTIOTRAK: (run by Dr. Ashish Kumar’s Lab at Cincinnati Children’s Hospital.) A novel test to monitor minimal residual disease. Currently, once patients undergo treatment (chemotherapy or targeted inhibitor), the response to treatment is measured by scans – CT, PET, or MRI. Unfortunately, these are not sufficient to detect small amounts of residual cells that then cause disease relapse. We now know that all histiocytoses are driven by acquired mutations in one of the members of the MAP kinase pathway – most common being BRAF and MAP2K1. We can now detect rare histiocytic cells in blood by using a new sensitive method called droplet digital PCR (dd-PCR). However, this is currently still a research method. We are developing it into a clinical test, which requires us to run several (40-50) samples on it and demonstrate the consistency, sensitivity, and specificity. Funds are needed to generate these data that will be used to apply for certification by CAP (college of American pathologists).