April 5 – One local family wants to raise enough money to take a trip to Disney World in May. However, they are looking for help from the community to make it happen.
Nine-year-old Briana Singh was diagnosed with Alexander’s disease in June of 2016. Briana started having seizures when she was 17 months old. In 2010, she was tested for Alexander’s disease and tested negative but another test done in 2017 confirmed that she had the disease. Briana’s mother, Stephanie Singh, said the previous test produced a negative result because the doctors tested someone else’s blood. “In 2017, the genetic doctor sat me down and told me the news and told me to start preparing my goodbyes because she won’t be here by the time she’s ten and that she will no longer know how to smile or move on her own.” For the single mother of three, learning about her daughter’s diagnosis “crushed” her soul.
Since the diagnosis, Briana continues to have seizures every couple months. Singh said when Briana has a seizure; she becomes unresponsive and can stay that way for days. The disease has made her unable to walk on her own and Singh said Briana will “watch her siblings and cousins play and screech for them to come closer to them so they can play together.” Singh said even though Briana cannot get up and play with the other kids, she still finds many ways to smile and have fun.
Briana will turn ten on May 12 of this year and when her mother asked her what she wanted to do for her birthday. Last year, Singh and her family went to Disney World for the Make-A-Wish program and Briana did not have to think twice about the answer to her mother’s question. “I asked her what she wanted to do for her tenth birthday and all she talked about doing was going back to Disney to see Mickey and all of the characters.” Singh went on to say that when she talks with Briana about the trip, she smiles and gets really excited. “Every time I talk about when we did go and how it will go this time, she just smiles huge and you can tell that she remembers and it’s amazing.”
Singh said they want to make the trip in time for her to celebrate her 10th birthday at Disney World. In order to do that, Singh said they need to raise around $1,400 for the trip. They will raise the money by hosting a 5K Walk/Run at Fairview Park on April 28.
The price for pre- registration is $25 for ages 16 & up and $15 for ages 5-15. Children under 4 are free. You can also pay $10 extra for T-shirts. The price will go up five dollars the day of the race. Late registration will take place from 8-8:30 a.m. with the race starting at 8:45. You can find more information about the event by going to Briana’s website and Facebook page. In addition to the Disney trip, the 5K proceeds will go towards paying for medical equipment for Briana.
On – 05 Apr, 2018 By Cassandra Smith