Abigail Ostrea was introduced to the world of rare diseases from a young age. When her sister, Hannah, was about 5 months old, she diagnosed with Gaucher’s Disease, a rare disorder that is often extremely life-limiting. Unfortunately, Hannah suffered from an even more rare subtype of the condition that affected the brain as well as the body. Abigail was faced with the kind of situation an older sister still in elementary school should not have to be in, where her little sister had an extremely grave prognosis and might only live to nine months. Fortunately for the Ostrea family, Hannah began her patient journey in Houston. There a large group of highly skilled pediatricians helped determine the diagnosis quickly — which is nearly unheard of for her illness. The family was also well connected to parents and support networks, and the Ostrea’s were in the best position possible to care for Hannah.
Unfortunately, a move from Houston to Las Vegas led to a loss of that top notch care and vibrant patient community that had surrounded them. The Ostrea’s were left largely on their own, and in response to Hannah’s declining health, the family heavily on private care for Hannah. Professional, private nurses became a frequent sight in their home. Abigail spent a lot of time watching those nurses, learning a bit about what they did and even helped with some of the tasks such as g-tube feeding and helping suction her sister’s trach. Even at a young age, she could see something she liked in how they took care of her sister. They were helping people, making sometimes hard lives a bit easier. Everyone in the family, mom, dad, brother, and sister, played a role in helping keep Hannah’s health as stable as they could. Sadly, Neuronopathic Gaucher’s Disease is relentless, and no treatment yet exists that can stop its effects. As Hannah’s health continued to decline, hospice care began for her at home, which allowed the entire family to keep her close through the end stage of her illness.
Hannah passed away after living more than three times longer than any doctor expected her to. She was happy until the end; full of life and love, something that makes an impression on Abigail to this day. As she grew up, Abigail watched her parents turn this difficult situation into good, founding the Little Miss Hannah Foundation to honor their late daughter. The Ostrea family has built a large and vibrant childhood rare disease patient community that was lacking when they first came to Las Vegas. As the circle of patients and families grew Abigail met kids in a similar situation as her. Today Abigail is able to bond with children with rare diseases and their siblings, providing the community of peers that can get so easily lost for kids singled out by illness. Over time she became the big sister to many, offering crucial friendship and guidance to kids in often tragic situations. The Ostrea family has poured themselves into the rare disease space in the wake of Hannah’s passing. No matter their age, each of them were doing their part.
Today Abigail aims to be involved in healthcare in a more direct way and is thinking about different careers that might help find solutions to diseases. In the meantime, she has been busy learning how to become a proactive rare disease advocate. This year Abigail travelled to Washington DC as a part of the youth advocacy track with EveryLife Foundation. Through this program Abigail and others met with Congress members to discuss what it’s like to care for a family member with a rare disease and why it is important for legislatures to support legislation that will help kids with rare diseases. The trip acted as a type of training, building awareness for the legislators, and communications skills and foundational relationships for the future.
Although just a teen, Abigail has a lot of experience helping others. She’s lived through the loss of her sister Hannah, and used that experience to develop compassion. Not only has she helped her parents advocate, she’s helped children with similar situations cope with the challenges faced by them as rare disease patients and as siblings. She plans to channel her experience back into solving medical problems, and intervene to save the lives of others. Talented and kind, Abigail provides a strong example for others to follow. The work she does with others, and her bright future, should be profoundly inspirational to anyone who hears about them. She’s an example of the good that can come out of dark times, and she’ll no doubt continue to be a force for positive change long into the future. For all Abigail has accomplished, please join Engage Health in honoring her as our newest Rare Disease Difference Maker™!