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CAF KIDS STORIES

Mohammad Ziyan

Mohammed Ziyan is a five month old baby boy from a remote village in the district in Kerala. He was born on 22nd November 2016 with a birth weight of 3.2 kg in Manzoor Hospital, Kasargod. This bundle of joy was the light of his parents lives and they were heartbroken when their baby was noted to have decreased activity on the second day of his life. He was advised an Echo, and the results showed Tetralogy of Fallot (TOF). This condition results in low oxygenation of blood due to it mixing with deoxygenated blood in the left ventricle via the Ventricular Septal Defect (VSD). His parents went to meet Dr Sachin from Sunrise Hospital, Kanhangad for a second opinion. Dr Sachin confirmed the diagnosis and referred them to the Amrita Institute for further management. On 19 April, Dr Krishna Kumar (Pediatric Cardiologist) and Dr Brijesh P K (Surgeon) consulted the child and advised an ICR valve sparing. The boy’s father, Mr Sameer is a Salesman working in a local supermarket in Kasargod and is earning a monthly salary of only Rs 9500. With this income, he could not manage the cost of the surgery and was planning to avail loans to manage the cost. Since Mohammed is their first child, his parents were very concerned about the surgery and his well being. The baby’s mother, Shameema, who is only 21 yrs of age was not in a condition to accept the disease of the baby and was incredibly scared and confused. She only agreed to the operation after the extensive counselling from the surgeon, Dr Brijesh. The child’s surgery was scheduled on 12 May this year and was operated on succesffully. He is doing well and is on a road to recovery alongside his father and now relieved mother.

Roshini

Only 6 years old and the third child to Gajrajand Sunita. They have a large family of five children – three girls and two boys and together live in Uttar Pradesh. She is suffering from a congenital Heart Disorder and had a complex subset of Tetralogy of Fallot (TOF) called Double Outlet Right Ventricle (DORV). In this particular ailment, the aorta originates from the pulmonary artery instead of the left atrium. Resulting to an override of the two main arteries. When Roshini first started showing signs of an illness – her parents unfortunately were oblivious to the severity and did not show her to a doctor. This lead to her saturation levels dropping quite significantly and she started turning blue. A local doctor finally referred them to an NGO called “Pure Hearts” who got in touch with us. Gajraj, is a tailor and earns a salary of Rs 8000 monthly. As one can imagine, with a family of this size it’s close to impossible to manage the house, and the needs of his children and wife. Now, with the financial stress that looms over them as they search for ways to get their daughter treated and live a life of good health. Roshini has been operated, and also discharged in a stable condition all because of your compassion for these children in need, and your belief in us to Save Little Hearts. We have been able to give her a chance to go back to school and continue her life that she has been blessed with. Her parents are relieved and are eternally grateful for the help, we have been able to provide together – sharing our vision to make a difference.

Kasinath

Kasinath is a five-year old boy from a remote village tucked away in Kerala. He was born on 23rd December, 2011 and was noted to show difficulty in feeding. At first this wasn’t as alarming, but after two weeks he was brought to a local hospital for a diagnosis – where the parents were shocked to understand that their new-born son was suffering from a Congenital Heart Defect. He was brought to Amrita Institute of Medical Sciences, in Kochi for further management. Dr Krishna Kumar consulted the baby and confirmed the diagnosis – a Complete AV Canal Block – Kasinath, was advised an early surgery. However, the father was not financially stable and could not afford the surgery. He is a priest in a temple and earns Rs 4500 per month. In March 2012, Dr Sunil G S did an AV Canal Repair with the help from the Hospital Patient Support System. After the surgery, the child recovered well but when he turned eight months old, his parents noticed some impairment with his hearing ability. He was taken once again to Amrita Institute of Medical Sciences where they confirmed he had loss of hearing and needed a Cochlea Implantation, which costs approximately 18 lakhs. To add to it, Kasinath was diagnosed with right facial nerve palsy as he began to get twitching movements of the eye and mouth for a few seconds. This amount of money is far from imaginable for the parents, there is absolutely no means with which they can get together even close to that amount for the treatment of their son. Currently, the father has spent all their money on various medical expenses, he cannot pay for the treatment to help his son’s hearing. Kasinath’s growth milestones have beens slow – he started walking only at the age of four. He is the eldest child in the family, he has a baby brother who is one years old. Currently, he needs a surgery known as SAM resection (his second cardiac surgery) which costs approximately Rs 2 Lakhs. His father is unable to pay for his son’s treatment this time as he has previous loans to repay – together Genesis Foundation is determined to raise funds to take this financial burden off Kasinath’s family and give him a chance to live a healthy, happy life.

Alakananda

Alakananda is a 4 year old girl from a remote village in Calicut, Kerala. She was born on 7th October 2012 with a birth weight of 2.79 kg. Her mother was delighted when she held her first daughter in her arms but on the 2nd day of her baby’s life she was noted to have murmur and cyanosis and was diagnosed with Congenital Heart Defect - Ebstein's anomaly of tricuspid valve. Her parents were distraught as this was their first child and they did not know what to do. The child was on regular follow up in Calicut Medical College. She was seen by Pediatric Cardiologist (Dr Shine Kumar) and Surgeon (Dr Brijesh P K) from the Amrita Institute during the monthly outreach clinic at Calicut Ashram on January 2017. Alaknanda was later referred to the Amrita Institute for further management. A detailed investigation was done at the Amrita Institute on January 25th 2017 by Dr Shine Kumar who confirmed the diagnosis. During a joint cardiac conference that was conducted on 28 January by the Pediatric Cardiologists and surgeons, they decided to do a Tricuspid Valve repair for the baby. The parents were called and Dr Shine Kumar counselled the family about the need for surgery. Her parents were very worried about the cost of the surgery as Alakananda’s father is a carpenter and earns only Rs 250 daily and that also depends on the availability of work. She is the only child to her parents but still the huge cost of surgery is a burden for the family. The family reached out to the Genesis Foundation and thanks to the financial aid provided by our donors, Alaknanda has been operated on, discharged and is now healthy and doing well.