Sydney’s Song

Where it all began

January 24, 2017 was the day our life changed. Our daughter Sydney was diagnosed with an extremely rare neurodegenerative disorder that effects less than 500 people worldwide. BPAN (Beta-Propeller Protein-Associated Neurodegeneration) is a type of NBIA (Neurodegeneration Brain Iron Accumulation). BPAN is spontaneous and not a hereditary disease. It is X linked which means that it is mainly found in girls, there are only a few boys cases reported. People affected by BPAN typically have childhood global developmental delays, intellectual disability, an ataxic walk, multiple seizure types, slow cognitive gains, and little to no speech development. Typically around the age of 25 BPAN individuals begin a sudden onset of regression and will develop muscle spasticity involuntary movement, cognitive decline, Parkinsonism, and Dementia. She will slowly lose EVERYTHING she has worked so hard to gain. 

The NBIA Disorders Association focuses on research and raising awareness for NBIA families. Research is currently being focused on BPAN and they are searching for treatments that may help Sydney in the future! NBIA Disorders Association is funded from the community and does not receive any government funding for research. Since there are no treatments available and no cure for this devastating disease it is imperative that we raise awareness and get researchers the funds they need in order to continue to search for treatments, and hopefully eventually a cure!  Please consider making a donation! All donations raised through Sydney’s Song will be designated specifically for BPAN research! 

The thing that keeps us going is knowing the fact that EVERY ONE OF US is terminal, NO ONE is guaranteed tomorrow! We are on a mission to make every single day the VERY best that it can be. We are doing anything and everything that we can to learn about this disease and save Sydney! 

We love each and every one of you so much and thank you so much for your love and support of our Sweet Sydney!

Learn about BPAN

https://www.nbiadisorders.org/

http://nbiacure.org/

Raise Awareness

Share our story and join our Facebook Group: Sydney’s Song-A BPAN Story

facebook.com/groups/SSBPAN

Fundraising Events

We are always looking for volunteers to help with fundraising and raising awareness for BPAN and all NBIA disorders. If you would like to help please contact us today and we will reach out to you!

Contact Amber Denton at adenton@NBIAdisorders.org