The story of Merna
November 18, 2017 is a day to be remembered as the twelfth floor of the Radisson Hotel in Port of Spain, Trinidad came alive; it was the launch and fundraising dinner of the Nathan Asher Foundation for Children with Rare Disease, the first Rare Disease Foundation in Trinidad and Tobago.
The Foundation, a non-profit organization, registered in Trinidad and Tobago was inspired by the experiences of a tiny human, baby Nathan Asher Ellis, a symbol of hope for children living with rare diseases.
The sound of Andra Day- Rise Up, permeated the air as patrons were taken on a journey from Nathan’s conception, through the joy of his birth, the challenges of his rare disease and hope as he won the battle and gained his miracle.
How the NAF started
It all started when Nathan was diagnosed with a rare and life-threatening liver disease. Through significant financial, emotional and spiritual support, Nathan was able to undergo surgery in May 2017 that saved his life. He is now a healthy and happy toddler. His family members, after receiving such kindness, felt the need to give children like Nathan another chance at life and so the Nathan Asher Foundation for Children with rare Disease was birthed. The objectives of the Foundation include:
Generating funding through fundraising events
Raising awareness about children with rare diseases
Providing group and individual support sessions that empower and give hope to children with rare diseases and their families
Collaborating with prospective donors to assist affected children who may not have insurance and do not qualify for government aid
Fostering a healthy and robust rare disease research environment
It takes a village
In his keynote address at the launch, Dr. Raulnel Neptune—Chair of the Medical Review Committee and Director of the NAF—spoke about the importance of teamwork in supporting children with rare diseases as well as their families. He emphasized that the Nathan Asher Foundation will seek to collaborate with other organizations to ensure that children with rare diseases receive the necessary support to take them through their journey. He stressed the importance of the team approach and indicated that the presence of the patrons of the launch showed their support of the NAF’s cause, a cause to give a child and children with rare disease another chance at life and even the opportunity to have a better quality of life.
Jamaica’s High commissioner to Trinidad and Tobago, His Excellency David Prendergast, echoed a similar sentiment, in a written statement that was presented at the launch on his behalf. In his message, he appealed to the medical professionals, government leaders and spiritual leaders, in attendance, to become the “village” that takes care of children with rare diseases. Among the professionals and leaders at the event were: Mr. Watson Duke, Minority Leader of the THA; Dr. Kern Tobias, President of the Caribbean Union Conference of Seventh Day Adventist; Pastor Leslie Moses, President of the South Caribbean Conference of Seventh-day Adventist, Mr. Haniff Benjamin, Chairman of the Children’s Authority of Trinidad and Tobago, Ms. Selma Valentine-Ramdin, CEO of the Children’s Life Fund; Ms. Barbara Rampersad and Ms. Sushilla Maharaj, Consultant Pediatric Surgeons; and Mrs. Betty-Ann Pilgrim, Chief Nursing Officer for Trinidad and Tobago.