FLETCHERS LAKE: A young Fletchers Lake girl is getting her wish granted to go to Disney world thanks to the Children’s Wish Foundation of N.S.
Olivia DeMone suffers from Ataxia telangiectasia. The family found out her diagnosis in September 2018. Ataxia telangiectasia is a rare, neuro-degenerative, autosomal recessive disease causing severe disability.
Recently, Olivia was the special guest at Grand Parade by Halifax City Hall where she, along with HRM Mayor Mike Savage, raised the Children’s Wish Flag. After the flag raising, Olivia was surprised with news that her wish was being fulfilled.
Amy DeMone, Olivia’s mom, said her daughter struggles to keep her balance every day.
“Even when she sits it takes lots of energy to keep her body still,” said DeMone. “Using all this energy makes her very tired and more off balance.
”We also try to make sure her diet is as healthy as we can to keep her immune system good to fight off flu’s/colds.”
Because of the disease, Olivia’s immune system is compromised so she can get very I’ll.
Amy said having the wish for her daughter, a student at Holland Road School, granted means a lot.
“She will get to see all her favourite Disney characters and go on rides,” said Amy.
Why did she want to go to Disney?
“She wanted to go to Disney to see Mickey, princesses and the rides,” said Amy. “She watches it on kids tube all the time.”
While at Disney, Amy said Olivia will have a special meet and greet with Mickey.
“She will also get to share her wish with her cousin Rosealie, which makes it even more special,” said Amy.
Mayor Savage presented Olivia with her Mickey suitcase after she raised the flag at Grand Parade.
“The smile on her face was awesome,” said Amy. “She was really excited.
A fundraising and awareness 5k walk in the woods is scheduled for May in Lower Sackville. It will take place May 11 from 11 a.m. to 1 p.m. at Sackville Lakes Provincial Park – Second Lake Trail. Registration, information about the disease and a couple messages from Olivia are posted. Click here to go to the event website.
Amy said Olivia’s teacher showed the clip of her receiving her wish to her classmates and they were all excited.
The family is looking forward to the adventure and making memories to last a lifetime.
“We are so happy and excited,” said Amy. “It will be wonderful family time spent together and the memories will be with us always.
“We don’t know what her future holds, so going and doing this now while she is healthy and has good mobility is best.”