Sydney's Song: Family on mission to raise awareness of rare disease

Sidney Denton has a smile that can light up a room doing great she loves to see dance and play with her brother she's one of the sweetest girls I've ever met my entire life by all appearances she looks like a normal five-year-old but Sydney is literally 1 in a million when she was diagnosed there was only less than 100 people in the entire world that had B pen it was about three years ago that she was diagnosed with the disease for which there is no treatment or cure when thingi was born we star

ted realizing at about the nine-month mark that she wasn't really meeting her milestones we visited a neurologist and they recommended an MRI and two rounds of genetic testing that's when Cindy's parents received the news they never expected to hear Sydney had an extremely rare genetic disorder known as beep and beep n stands for beta propeller protein associated neurodegeneration it's a condition most people have never heard of and that includes doctors no matter what specialist we see none of

them have heard of beep an and so I have to spend the majority of our appointments educating the medical community beep and causes developmental delays and eventually progresses into symptoms similar to Parkinson's disease and dementia it's usually in childhood they have little to no speech development many of them don't walk at all Sydney's one of the few that do she also suffers from seizures and as children with V pan grow older they begin to decline cognitively whenever they reach around adu

lthood would be probably 25 to 30 they will start a period of regression basically the parkinsonism and the dementia part of b pan will set in three times a week Sydney comes here to open door pediatric therapy in northwest Houston she gets occupational therapy physical therapy and speech therapy we've been working on increasing her communication through an iPad technology which helps get her basic once and needs out which one it's easy to see how much she loves it here Sydney is obsessed with t

his room she really enjoy our swings she enjoys getting in the ball pit and that's how we accomplish a lot through therapy is through play I get to take care of her so much I get to play with her so much and I just really love her while Sydney is living life to the fullest her family is hoping to pave the way for beep and research we created the Sydney song charity and I knew that I had to do something I couldn't just sit back and be helpless I named it Sydney song because that's her favorite th

ing to do is to sing she liked to sing songs to herself in the mirror she sings stuff like ABCs baa baa black sheep wheels on the bus Sydney's song started as a Facebook page an online community to raise awareness of beep an but it quickly turned into something much more not really did morph into the Sydney song charity from there we hold annual big fundraisers that have silent auction so far Sydney's song has been able to raise nearly $70,000 for the ndia Disorders Association which supports be

ep and research and Sydney is now the star of her own book by creating the Sydney songbook I really wanted to showcase that Sydney was just like everyone else even though she can't speak to you she can communicate in a way that she knows and that's through singing her favorite songs Sydney's family is hopeful that as genetic testing becomes more advanced and awareness of beep Ambrose a treatment will one day be available not just hopeful I know that there will be it may not be in my daughter's l

ifetime but I know that everything that I'm doing right now is gonna benefit our community in one way or another and they want other families dealing with beep and to know we've actually been able to connect with five other families in the Houston area we just started doing our fundraisers together so we have created the be pan tribe that we have a small community here in Houston when there's so few of us in the world is very heartwarming [Music]