Please help me support the PACS1 Syndrome Research Foundation by making a donation through my page. The process is fast, easy, and secure. 

100% of your donation will support PACS1 Syndrome research initiatives. With your generous contribution, we can gain a better understanding of the underlying causes of this rare neurodevelopmental disease and aggressively pursue more effective treatments and a cure.

Thanks so much for your support... and please don't forget to send this page to any friends you think might be interested in donating!

Raelynn's Story:

Our sweet Raelynn Brooke was born July 11, 2020. She is now 3 years old. Shortly after Raelynn was born, she started having seizures. It took us a few doctors' appointments and a hospital stay for a few days before she started having back to back seizures which led me to call 911. Raelynn had 20 seizures back to back on July 28th, 2020. She was only 17 days old. The series of seizures is what resulted us in being admitted to Rady's Children's Hospital in San Diego, Ca. We were there for 6 days in which Raelynn experienced a lot of different tests to try and figure out why she was having these seizures. On August 3rd, 2020, when Raelynn was 23 days old, a genetic specialist came in the NICU room and handed me a piece of paper and told me our daughter has a rare genetic disorder called PACS1 Syndrome. This was the reason why she was having seizures. He also told us not only will she have seizures, but she will be globally delayed in all areas of development. Children with PACS1 also have numerous medical conditions. 

Receiving the news of Raelynn's diagnosis was heartbreaking and extremely scary. To be completely honest, it was life changing and our family grieved a lot the first year of Raelynn's life. Especially when she would struggle to meet a milestone that came so naturally to typically developing babies. We were very fortunate to receive Raelynn's diagnosis at such a young age. We immediately got her involved in early intervention which has helped her tremendously.

Currently, Raelynn receives physical therapy twice a week, occupational therapy twice a week, speech therapy once a week, and she attends preschool Monday- Friday for 3 hours. She currently is in an ABA classroom and she loves it! On a regular week, Raelynn has 6-7 therapy appointments. Raelynn also has different medical conditions that require her to see multiple specialists. On top of the seizures Raelynn experienced, she has a bilateral coloboma in her eyes which affects her vision, and she has two small holes in her heart which should eventually close on their own. In one year, Raelynn has approximately 300+ appointments between medical and therapy visits. THIS is why helping fund research to find a cure for PACS1 is so important. Raelynn works so hard every single day to achieve milestones that come naturally to typically developing children.

Our family prays for a cure for PACS1 Syndrome so that Raelynn can live a long, happy and healthy life. We pray for a cure so maybe Raelynn will be able to verbally communicate with us and be able to make friends with other children. We pray for a cure so Raelynn doesn't have to have 300+ appointments a year to help her reach milestones. We pray for a cure so Raelynn never has to experience the pain of a seizure again. 

Our family cannot thank YOU enough for taking the time to read a glimpse of Raelynn's story and helping support our baby girl and all the children diagnosed with PACS1 Syndrome. If you know Raelynn personally, you know what a beautiful little girl she is. She truly is a gift from God. She has taught our family to slow down and enjoy the important things in life. We love her SO much and would do anything for her. Thank you, thank you, thank you, for your support!!

Watch the video below to learn more about the research being done to find a cure for PACS1 Syndrome. Our Rae girl is in the video too! :)

https://youtu.be/B9xOvrm7Q0E