GRAAFF-REINET NEWS - The Maya Deaf Foundation (MDF), of which the main objective is to provide financial assistance to those needing cochlear implants and hearing aids, has adopted Graaff-Reinet's Ava-Rose Adonis as a beneficiary this year.
Ava-Rose was born on 17 September 2012 at the Midland Hospital in Graaff-Reinet. As a result of complications in the first few days after birth, she was transferred to the Life Mercantile Hospital in Port Elizabeth.
There she was kept for a week after a series of tests were performed and she was diagnosed with septicaemia and jaundice. Not long after returning home, her mother, Nadine, noticed that she was turning blue after every feed.
They were referred back to Port Elizabeth where more tests followed, and this time it was discovered that her heart was leaking. At only one month old, little Ava-Rose underwent heart surgery at the Netcare Greenacres Hospital. During that time it was also discovered that she has an extremely rare chromosomal disorder (10q24), one generally characterized by unusually slow growth, abnormally diminished muscle tone, and mild to severe delays when it comes to the coordination of mental and muscular activities.
Over the years, geneticists were having trouble pinpointing exactly what is causing Ava-Rose's problems. Her hearing was only tested when her mother realised that Ava-Rose was not reacting to her or making sounds. Upon testing, Ava-Rose was found to suffer from profound hearing loss. To help her, she was fitted with hearing aids at the age of three. Almost immediately thereafter she started crawling, making sounds and standing. She eventually learned to walk, although she still often struggles with her balance.
Unfortunately since this intervention, for financial reasons amongst others, Ava-Rose has been unable to receive the medical help she needs.
Her mother has limited medical aid which covers hospital admissions but comes nowhere near to covering all the medical expenses that full treatment would incur.
"Ava-Rose is now six years old, but she still lacks the ability to communicate. Her education, a constitutional right, currently hangs in the balance," said Laszlo Maya, founder of MDF and himself profoundly deaf.
Ava is a fighter. She is a beautiful and loving child who, despite her lack of ability to communicate, loves to be around people. Her mother describes her as always having a smile on her face, and that she enjoys playing outside like every other child. Nadine's wish for her daughter is that she will learn to communicate and be able to obtain the required assistance for all her disabilities".
"We are determined to help Ava-Rose as far as we possibly can," said Laszlo Maya. "We have already committed the money raised by Union Prep School at their annual Candles by Candlelight towards her cause".
Currently, MDF is providing Nadine and Ava-Rose with a tablet to be used for visual cues and which contains a recommended special communication app. Speech therapists have recommended, as a starting point, Nadine and Ava-Rose practise communicating with each other using pictures and visual cues. Nadine has fondly highlighted the rate at which Ava-Rose is learning to copy everything and use electronic devices.
MDF would like to appeal to the Graaff-Reinet community to support the fundraising efforts for Nadine and Ava-Rose. These funds are needed for transport costs to Port Elizabeth for visits to speech therapists, audiologists and other medical professionals, and the associated medical fees. It would also be wonderful if Ava-Rose could be fitted with new top-of-the-range hearing aids - currently, she is still using the aids she was given at the age of three, and due for replacements from Livingstone Hospital, but so far this has not happened.
"Every parent wants their child to laugh, to learn and to enjoy all that life has to offer. They want them to unlock their potential and be the best that they can be.
"As far as a mother is willing to go for their child, sometimes they need help. No matter the odds, we can help each other bring hope home," concluded Maya in an emotional appeal.
Anyone prepared to assist can contact Laszlo Maya on laszlo@mayadeaffoundation.co.za
The Maya Deaf Foundation (MDF) has adopted Graaff-Reinet's Ava-Rose Adonis as a beneficiary this year.
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