Help little Faron in her ongoing fight
She is the only known baby in South Africa and one of 1,000 worldwide who suffers from it.
A four-year-old Toti girl continues her fight against a rare genetic disease.
Faron-Mae Fisher was diagnosed with Glycogen Storage Disease type 0 in June 2012 at the age of 18 months.
She is the only known baby in South Africa and one of 1,000 worldwide who suffers from it.
Due to her deteriorating state, where she was in and out of a hypoglycemic coma, she is developmentally delayed and as a result cannot walk, stand, crawl, talk or eat through her mouth, or do any of the normal little things that other toddlers do.
But Faron-Mae is a determined little fighter and has had a journey full of challenges and highlights throughout the year.
“Faron-Mae started at an amazing special needs school, Arise n Shine Khanyisa Centre in July,” said her mother, Paula. “It is run by a team of therapists, who have done an amazing job getting Faron-Mae to where she is today.
She has learnt to choose between yes and no and chooses her favourite songs at ring time. Her intent to communicate is developing beautifully and everyday is a gem for our little girl.”
Faron-Mae and her family recently celebrated her progress at the school’s ‘Marvel Superheroes Little Laps Victory Day’. “What a special day it was. It is so awesome to see how far she has come.
It is important to celebrate all the little steps, rather than concentrating on the ‘normal’ milestones. It makes you realise how much people get carried away with normal developments and take these for granted in children.”
Faron’s parents, Paula and Dean, thank all the people who have supported her trust, through financial support, sponsorship and fundraising opportunities, allowing them to provide her with all her needs, which are financially challenging.
A number of successful fundraisers were held this year. “The Faron-Mae Fisher golf day in July was a huge success and we plan to do another one in January,” said Paula. “The Monarchs MC raised funds through their well-supported ‘bikers for Faron pub crawl’.
Brad of Illovo Nursery has been awesome in supporting her trust too, so a big thank you to him.
We would like to run a Barnyard evening, but a 50% deposit is required upfront, which is financially challenging, as her trust is used to pay for her daily medical, therapy and special educational needs.
This is a call out to the Toti community. The Faron-Mae Fisher Trust is in need of further financial support. Without fundraising initiatives and support from the community, we are unable to provide her with all that she needs.”
If you can assist in any way, contact Paula on 082-304-8195.
