Ava-Rose Adonis was born on 17September 2012 at the Midlands Hospital, in the gem of the Karoo – 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 test 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 feeding. They were referred back to Port Elizabeth where more tests followed, and this time it was discovered that her heart was leaking. At only 1 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 with pinpointing exactly what the problem is. Ava-Rose’s hearing wasn’t tested in Graaff Reinet or during her time in Port Elizabeth. Nadine questioned her hearing when she picked up that, over time, Ava-Rose was not reacting to her or making any sounds. Upon testing her hearing, Ava-Rose was found to suffer from profound hearing loss. To aid her, she was fitted with hearing aids at the age of 3. Almost immediately thereafter she started crawling, making sounds and standing. She eventually learned to walk, although often struggling with her balance to this day. Since then, and for financial reasons amongst others, Ava-Rose has been unable to receive the medical help she needs and deserves. It is no secret the financial burden medical bills can place on one. She is 6 years old today, which is school-going age, but still lacks the ability to communicate. Her education currently hangs in the balance – her Constitutional right.

But that is not who Ava is. 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.

The Maya Deaf Foundation is determined to help Ava-Rose as far as we possibly can. 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/visual cues. Nadine has fondly highlighted the rate at which Ava-Rose is learning to copy everything and use electronic devices. We are humbly appealing to the public to help MDF with its fundraising efforts for Nadine and Ava-Rose, which includes raising funds for:

  • Transport costs to Port Elizabeth for visits to speech therapists, audiologists and other medical professionals
  • Medical costs from visits to speech therapists, audiologists and other medical professionals
  • Top of the range hearing aids and other assistive devices

Every parent wants the absolute best for their children. They want 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.

If this is a cause you would be interested in donating towards, please find our banking details below.

MAYA DEAF FOUNDATION

Nedbank

1148577068

Reference: Ava’s Fund