MTB fundraiser to match Faron-Mae’s strength

Amanzimtoti resident, Malcolm Wallace will cycle the 36ONE mountain bike challenge in Oudtshoorn in April to raise funds for Faron-Mae Fisher.

Six-year-old Faron-Mae was diagnosed with an extremely rare genetic disease, glycogen storage type 0 in June 2012 at the age of 18 months.

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 and chronic vomiting.

At the age of 22 months, she weighed a mere 3.5kg, following her birth weight of 2.5kg. She was left severely developmentally delayed, unable to eat or drink through her mouth, crawl, walk or talk.

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.

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 in February, where metal rods were inserted into her back on either side of her spine to assist with gradual straightening as she grows. Every six months she has 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, the recovery via physiotherapy, nor orthotic brace.

Costs escalated so her parents set up a trust fund for the public to assist financially with medical bills, as well as holding a number of fundraisers during the year.

“Faron has just undergone her second scholiosis spine lengthening procedure and is doing very well. It appears she just gets stronger and stronger after each of these procedures. She is an amazingly strong little girl and I am truly inspired by her strength and determination,” said her mother Paula.

Malcolm will tackle the 360km mountain bike challenge in the Western Cape from 21 to 23 April to raise funds for Faron-Mae’s trust fund.

“For this fundraiser to be a great success, we need your support by sponsoring Malcolm,” said Paula.

To support this fundraiser, call Paula on 082-304-8195 or Vivian Wallace on 082-446-9064.

Trust fund details: The Faron-Mae Fisher Trust, FNB, IT number: 933/2012 (Durban), business account, account number: 62382573783, branch code: 250655.

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