Failed by a healthcare system that is largely ignorant of their existence, four patients with a rare and life-threatening disease learn to find strength in each other and their small, but strong community.

 

SPECIAL BLOOD documents the struggles, successes, and medical realities of four young patients living with a rare and life-threatening blood disease called Hereditary Angioedema. Failed by a healthcare system that is largely ignorant of their existence, these patients learn to find strength in each other and their small, but strong community.

 

Special Blood focuses on the personal lives and social implications of having a rare disease. It dives directly into the lives of four patients, following the ups and downs of living with HAE. Each of our subjects is from a different part of the country and represents a different theme that threads itself through universal patient stories. Some are inspiring success stories; some are stories of struggle; some are heart-wrenching stories of death too early. The character’s arcs are woven together through the universal themes. The footage is a mix of fly-on-the-wall filming combined with interviews and b-roll.

We received interest from patients all over the country who wanted to share their stories. While we only focus on the journeys of four patients, we have other supplemental interviews that are used at key moments in the film to expand upon the major themes. Our four selected patients are Noah, Kelsie, Lora, and Ava.

Noah, a 9-year-old boy from southern New Jersey,  helps spread awareness about HAE to everyone in his small town. Since Noah’s diagnosis at 3, he has been in and out of the hospital, but his intelligent and bright demeanor never gives away the severity of his illness. He is learning to cope with HAE by becoming a confident public speaker and recently spoke in front of 1000 people at the HAE National Summit. His mother, Nikia, also has HAE. For nineteen years, she struggled with attacks before the FDA approved drugs specifically for HAE. She constantly missed school, sometimes having to withdraw because of her absences. After graduation, she also struggled with missing work. But after getting on the new HAE treatments, her life has changed. She is now earning her Master’s degree, and in the past 2 years, she has not had to take a single day off work because of HAE. She has helped educate Noah about his disease and has encouraged him to help educate others about HAE.

Kelsie is a 16-year-old dancer from Illinois who was recently diagnosed with HAE. Since her diagnosis, she has had to quit dancing because it is almost impossible with constant swelling attacks. Her mother, Marti, is a mom on a mission, refusing to give up until her daughter is living like a normal teenager.

Kelsie wants to use her struggle for good by becoming the first HAE patient to also treat the disease, but Marti isn’t sure that Kelsie is healthy enough to go away for medical school.

Lora Moore lives in Cullman, Alabama where HAE used to be known as “Moore’s colic”. Her daughters, Lyndon and Hillary, both have the disease. When Lyndon was 12, she had an incident at school where her throat felt strange. When she got home, she felt better and had a normal evening of dinner and tv with her mom and her sister. Fifteen minutes after
going to bed, Lyndon burst out of her bedroom gasping for air. Her mother held her and tried to do CPR as Hillary called 911, but Lyndon’s throat had swelled shut before the paramedics arrived. Lora started the Annual Memorial Walk for HAE in honor of her daughter and uses Lyndon’s death as a way to spread awareness about HAE. She does not want Lyndon’s death to be in vain.

Ilyse Levy is a wife, mother, and caregiver living in LA. Ava, her 3-year-old, started having attacks when she was only 18 months. Despite swelling weekly, Ilyse encourages her daughter to try new things and not let her disease define her. Recently FDA approved HAE treatments are not approved for Ava, but Ilyse is hopeful that new clinical trials will lead to a treatment that is appropriate for a child. Ilyse tells Ava that she shares “special blood” with her father.

 

Anthony Castaldo helped found the HAEA when one of his daughters had a near fatal attack. He has been instrumental in lobbying for HAE patients in Washington DC. Janet Long, is an important patient advocate for the HAE community and serves as vice president of the HAEA. She organizes patient events including the national conference (at which Noah Davis spoke) and the annual HAE Day. Over the past six years, the HAEA has helped to get the first HAE treatments FDA approved. This year, they founded the first US Angioedema Center. The center is based in San Diego and is run by Dr. Bruce Zuraw and Dr. Marc Riedl, international thought leaders in angioedema and driving forces behind HAE research in the US.

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