Preneesha Gowtham holding her four-year-old daughter, Shanaya, who was diagnosed with Angelman Syndrome.
After weeks of struggling to meet developmental milestones, Preneesha Gowtham was both shattered and devastated after she learned that her visits to the neurology and genetic specialist, revealed that her daughter had been diagnosed with Angelman Syndrome.
With more hospital stays than discharges, doctors worked tirelessly to alleviate little Shanaya’s pain and her mother’s distress.
It was during this trying time that Gowtham, a health care assistant, learned that she would use her expertise on her own daughter. When at home, Gowtham made sure that her daughter was well attended to and fed through a tube that goes into her stomach.
“It has been an incredibly difficult road, but all I can do as a mother is have faith. God takes a lot of credit for giving Shanaya and I the strength to endure everything we have so far,” Gowtham said.
In 2016, when Dr Julia Ambler from Umduduzi Hospice Care for Children crossed paths with Gowtham and her daughter, the trio have been inseparable ever since.
Speaking to the Phoenix Sun, Dr Julia Ambler explained what Angelman Syndrome is.
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“Angelman Syndrome affects the nervous system causing intellectual and developmental difficulty, speaking hindrance, balance and movement complications, seizures, and difficulty sleeping,” Ambler said.
She went on to explain that families with children that suffer from life threatening conditions can visit Umduduzi Hospice Care for Children.
“Umduduzi Hospice Care for Children is a hospital that provides palliative care to children living with life-limiting and life-threatening conditions such as heart disease, cancer and rare diseases. Parents and children are provided with child and parent counselling, pain and symptom management and end of life care if the child is going to die,” Ambler said.
She assured families of children living with life-threatening conditions not to feel afraid and alone while trying to care for a child with a serious illness.
“It is our role to provide them with care and support that they need to be able to cope. Despite all these challenges, Shanaya is a happy little girl. It is a privilege for Umduduzi to be a tiny part of the Gowtham’s journey,” Ambler said.
Gowtham expressed her gratitude to Umduduzi Hospice Care for Children. She also wishes to inspire other mothers to believe and trust that they are doing their best.