Meet Larry Wagh, father of Abigail Wagh from Pune, India. Abigail, my only daughter was born just 18 days after we lost my father due to failing health and unexplained circumstances. Abigail was diagnosed with Group D Unilateral RB on 23rd May 2020 during the First wave of the COVID 19 pandemic and strict lockdown. Abigail, then a year and half old, underwent 06 cycles of intravenous chemotherapy, Several EUAs, Cryotherapies and MRI Scans under the care of Dr Sangeeta Mudliar at Bai Jerbai Wadia Hospital for Children, Mumbai. Abigail eventually underwent enucleation of her Left Eye on 22nd October 2020 under the care of Dr Himika Gupta at Narayana Health’s SRCC Children’s Hospital, Mumbai. As parents, we have experienced the pain and suffering of not just our daughter but also of those parents of children that did not make it. We are on a mission to ensure that Abigail’s Testimony reaches out to everyone, and which gives them a glimmer of hope and not just save the sight but also save a child’s life. I first interacted with Megan and Team KTG in September 2020 during the WE C HOPE Meeting with Dr Jessy Berry. Being a trained and certified Palliative Care Nurse myself, I perceived that there was a dire need to educate the community and the medical fraternity regarding RB, especially as it goes undetected, often being recognized at the very end. We began Community Awareness with a Radio Program at 94.3 FM Radio One and a Podcast on Something You Wanna Know with Desmond Fernandes. We were able to spread awareness on Retinoblastoma with a Webinar on 13th September 2020 for over a hundred Doctors all over India. We collaborated with KTG on World Sight Day, 8th October 2020 and organized an International Webinar on Eye Cancer Awareness which brought in over 400 Nurses and Optometrists as Participants from all over the world. We teamed up with KTG and began working in Urban and Rural communities on Five Key areas such as Awareness, Screening, Appropriate Referral, White Eye (Leukocoria) Assessment, Low Vision Management and Ocular Prosthesis as Focus Vision 5. Understanding the need of support among survivors and families of children with RB, we started a Support Group and Organized Virtual RB Survivors Meet in India to showcase inspirational stories of RB Survivors, Discuss on Genetic Factors, Counseling, expression of talents and story sessions for children. We have represented ourselves as a panelist in the Global Glow Panel (Retinoblastoma Around the World) at the World Eye Cancer HOPE One Rb World Conference held between 1-3, October 2021.
Larry has been working tirelessly in India and across International borders in Patient and Parent advocacy towards Eye Diseases in Children. Larry has dedicated his life towards Palliative Care for patients with life-limiting illnesses with the Certification on Good Clinical Practice (GCP), National Trainer on End-of-Life Nursing Education Consortium (ELNEC) Basic and Core. Presently the First Nurse in the State of Maharashtra to pursue Ph.D. in Palliative Care Nursing from Bharati Vidyapeeth (Deemed to be University), Pune.
We are honored to represent INDIA and be part of KTG’s Global Vision, Mission and Purpose with outreach and support. We will diligently continue to spread awareness across the world on glow-related eye diseases and drive action to prevent childhood blindness.
