It takes a village to raise a child, so they say. But when your village is trapped in another country by circumstance and rising airfare costs, what do you do?
Somaya is mother and carer to beautiful Selena, who has suffered more in her short three years than any person should ever have to suffer in a lifetime. Diagnosed with three genetic conditions, the disease causing her suffering and irreversible deterioration is an infantile form of Niemann-Pick disease type C. It is a cruel, fatal disease to have to watch your child suffer through.
In the last 6 months, Selena has lost the ability to speak, crawl, eat, move voluntarily and interact with her family. Emergency hospitalisations now occur regularly. She is fed via a nasogastric tube and is completely unable to move at all on her own; one could argue, she has lost all quality of life. Requiring 24-hour intensive nursing, including suction and oxygen therapy, Somaya cares for her daughter every moment of every day with no respite.
"...when [Selena] was well and could able to talk she always told to my parents, I love you (ilobo in her accent) and told them come to my place. And today her wish is happened," Somaya said.
The emotional, mental, and physical strain that is carried by Somaya is unbelievable, and at times, unbearable – she is rapidly losing her daughter, having to watch her suffer daily and she knows that her daughter’s death is imminent. Working and operating a small business, Selena's father, Ali, is extremely hard-working. Although, he is unable to provide the intensive medical management and care that she needs whilst supporting his family financially.
We can all understand that we need our families to help get us through an ordeal. When the ANPDF was first contacted by Somaya in February 2022, our Patient Liaison Pip Johnston was first on the scene. What began as phone calls and emails for support and advice, became more substantial as the family's situation evolved.
Thanks to the generous supporters of the Australian NPC Disease Foundation, we were able to help advocate for Somaya's mum's urgent VISA to Australia and offer financial support for the costly airfare.
After a three-year battle, Selena has met her grandmother and a struggling Aussie family has been reunited.
To help families like Somaya's around Australia, as well as fund vital research for a cure, support the Australian NPC Disease Foundation in its goals of "Research. Cure. Persevere."
Ways to support NP-C in Australia: