A fundraiser for Faron-Mae Fisher who suffers from a rare genetic disease takes place at Splash Waterworld on Friday, 18 March.
Tickets cost R40 per person for unlimited rides from 6pm to 9pm.
“Come and join in the fun. Bring the family along and support our special little girl Faron-Mae, to raise funds for her trust,” said her mother Paula.
“For this fundraiser to be a success, we need prizes to be sponsored.”
The public can also support this fundraiser with a donation to her trust. Sponsorships will allow companies to market themselves with banners and flags on the day or have their company name displayed on posters that will be put up in Amanzimtoti, Scottburgh and local schools.
Five-year-old Faron-Mae was diagnosed with glycogen storage type 0 in June 2012 at 18 months of age.
Instead of the first two years of her life being full of milestones such as her first smile, first words, favourite foods, crawling and walking, it was the hardest stage of her life. She fought to survive each day, slipping in and out of consciousness, and battling nausea, pallor and chronic vomiting.
At the age of 22 months, she weighed a mere 3.5kg, following her birth weight of 2.5kg.
“She was dying right in front of our eyes every day and despite consulting with 22 specialists and pediatricians, not one of them could tell us what was wrong with her until she was diagnosed,” said Paula.
She was left severely developmentally delayed, unable to eat or drink through her mouth, crawl, walk or talk.
“Faron-Mae has a smile that lights up a room and she has the most beautiful laugh – a laugh filled with joy and happiness,” said Paula.
Despite not being able to walk, talk or eat through her mouth, this brave little fighter has continued to tackle whatever challenges life throws at her.
She communicates non-verbally with the use of cards and receives her nutritional requirements through a feeding tube in her stomach.
She attends sensory therapy, alternate augmentative communication therapy and physiotherapy weekly, which has been beneficial to her growth and development.
Costs escalated, so her parents set up a trust fund for the public to assist financially with medical bills.
Faron-Mae was then diagnosed with kyphscoliosis. As a result her spine has a 68 degree curvature, which if left unremedied, can be life-threatening.
She underwent growth rod surgery on her spine to correct this curvature on 16 February, where metal rods were inserted into her back on either side of her spine to assist with gradual straightening as she grows.
“Our brave little fighter was in ICU for two weeks, as her current condition of GSD type wreaked havoc with her body post-surgery. The stretching of her spine threw a curve ball at her tummy and oesophagus and severely affected her intake and tolerance of food, which she is dependent on to prevent medical complications associated with her drop in blood glucose levels,” said Paula.
With the first major surgery over, she will undergo a three-month recovery, which will be assisted with physiotherapy and an orthotic brace, in conjunction with her current therapies.
Every six months she will have to undergo a lengthening procedure through surgery to allow her spine growth to be in sync with the growth rod length, up to the age of 10 years of age. Medical aid will not fund the full cost of the surgery, neither the recovery via physiotherapy, or orthotic brace.
“Please support our annual Splash Waterworld fundraiser by either attending, donating to her trust or sponsoring prizes.”
If you would like to support this fundraiser, call Paula on 082-304-8195 or Dean on 083-278-8040.
Trust details: The Faron-Mae Fisher Trust, IT number: 933/2012 (Durban), First National Bank, business account, account number: 62382573783, branch code: 25065.
