“A Family’s Quest for Hope: Overcoming the Challenges of Waardenburg Syndrome”
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We consulted a local ear, nose, and throat specialist, who quoted us around $60,000 for a cochlear implant procedure. We are now exploring alternative
options in India, where the procedure costs $30,000, with an additional $1,200 for accommodation and $2,400 for return flights.
CATHERINE MUROMBEDZI
HEALTH CORRESPONDENT
Let us all help Amarni to hear. It’s possible with science, we have to pool resources and Let Armani hear.
The emotional impact of finding out that your baby has a hearing impairment is devastating.
The confirmation that your child has an impairment is a life-altering moment.
Deafness, an unseen disability, can only be truly understood by those who have walked this path. The pain of knowing your baby is deaf can be overwhelming, but it’s a burden that brings a family closer together.
“We discovered that our baby had hearing difficulties when the pediatrician noticed his white hair and blue eyes at birth. His skin tone was also unusual, as it would flush when he cried. The pediatrician conducted further research and informed us that our son had Waardenburg Syndrome, which affects sight and hearing. At seven months, tests confirmed that he was unable to hear.
Receiving this news was devastating, but we chose to accept our child as a gift, despite his condition. We sought counseling from a psychologist and received medical aid to cover the costs of tests. However, by the end of 2023, our allocation had been exhausted.
“We have started a GoFundMe appeal, but it’s not gaining traction due to restrictions on donations to Zimbabwean recipients and the platform’s fees. Despite this, we remain hopeful and pray that our son, Amarni, will one day be able to hear,” said the mother.
“Our journey with Waardenburg Syndrome has been a challenging yet transformative experience. Despite the setbacks and financial burdens, we remain steadfast in our commitment to giving Amami the best possible life. We hold onto hope that with the right support and medical interventions, he will overcome the obstacles of deafness and thrive. Our story is not one of despair but of resilience and determination. We believe that Amarni’s future is bright, and we will continue to advocate for his needs and fight for his right to hear. With the help of generous well wishers and support, the medical advancements can bring back the hearing, which is missing. We pray that Armani will one day hear the sweet sounds of life and reach his full potential.”
Science and innovation have revolutionised the lives of individuals who were once deaf or hard of hearing.
Cochlear Implants, the ones Armani is supposed to get implanted, are hearing deviced. These medical devices bypass damaged hair cells in the ear and directly stimulate the auditory nerve, allowing individuals to perceive sound.
Then there are hearing aids that are advanced with digital signal processing, noise reduction, and Bluetooth connectivity, which have improved sound quality and connectivity.
There are. Bone Anchored Hearing Aids (BAHAs): These devices transmit sound vibrations through the skull, bypassing damaged ears.
There is Auditory Brainstem Implants (ABI): For those with severe inner ear damage, ABI directly stimulates the brainstem.
Researchers are exploring gene editing to treat genetic causes of deafness.
There are many possibilities to bring hearing. It’s the cost that is prohibitive.
A small sacrifice from each of us will make Amami a happy and independent boy.
There is the possibility of sign language to enable people to “hear” through Sign Language Recognition: AI-powered systems which recognise and interpret sign language.
These innovations have transformed the lives of individuals who were once deaf or hard of hearing, enabling greater communication, connection, and independence.
GoFundMe https://www.gofundme.com/f/armanis-fight-for-sound/