Baby Navya fights for her life against a rare genetic disease

first_imgWebsiteWebsiteWebsite WebsiteWebsiteWebsite WebsiteWebsiteWebsite Spinal Muscular Atrophy (SMA) is an autosomal recessive genetic disease affecting the part of the nervous system that controls voluntary muscle movement. The disease is caused by homozygous mutations of the motor neurone SMN1 gene.Most of the nerve cells that control muscles are located in the spinal cord, which accounts for the word “spinal” in the name of the disease.SMA is muscular because its primary effect is on muscles, which don’t receive signals from these nerve cells. Atrophy is the medical term for getting smaller, which is what generally happens to muscles when they’re not active.The treatment for this disease is currently in usage in first world countries, including the USA, Canada and Australia at a cost of millions. However, it is neither registered nor available in South Africa. Without the treatment, Navya will have no chance of survival.The parents would like to thank all the medical practitioners, including Dr IO Vawda for doing his utmost best to see that Navya is comfortable.“All we need is love, prayer and support. We have faith in God; miracles do happen. May everyone remember our baby in their prayers.”Click to receive news links via WhatsApp. Or  for the latest news, visit our webpage or follow us on Facebook and Twitter. Join us there! Five-month-old Navya Ramdeen is in ICU at La Verna Hospital, fighting for her life.Baby Navya has been diagnosed with a rare disease called Spinal Muscular Atrophy (SMA). Since her diagnosis, Navya’s parents have to suction her and nebulise her throughout the day to clear secretions.Last week Tuesday, Navya was rushed to hospital after encountering difficulty breathing. Her airways became obstructed.During an exclusive interview with the distraught mother, she explained the situation…“I thought I was going to lose my baby. However, hospital staff managed to resuscitate and stabilise her,” said mother Kavisha Ramdeen (Hutheram).Kavisha and her husband Amith are first-time parents, having been married for seven years. They have known each other for over 20 years.Last year, the couple decided to start a family and that is when this beautiful soul was conceived.On January 2, Navya was born and brought into the world.“The day she was born was a blessing. We didn’t really want a specific gender; whatever God blessed us with, we were happy,” said Kavisha.It was in April that the mother realised something was wrong. Subsequently, the baby was taken to medical professionals and by clinical examination and confirmatory blood tests, the diagnosis of Type 1 SMA was made.Kavisha was heartbroken on hearing the news and recalls how she broke down in tears while still in the doctor’s rooms.“Our hearts ache to see our baby in so much pain. We never thought we would be strong enough to handle a special baby, but she has become our strength,” added Kavisha.last_img

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