Tag Archive for: vision loss

Flood: “Once you hear the sentence “your child has cancer” it is a constant flood till the end of treatment. It’s a flood of emotions, flood of information, flood of doubts, but in the middle of the flood you look at your child and you find the strength to keep your head out of water to survive.” Jackie, Mother of a Rb fighter. Image to the right shows a black and white photo taken underwater of a submerged woman wearing a long, white, sleeveless dress. Her face is above the waterline as her feet appear to be paddling and her arms extend to the sides.

Alphabet of Hope: Rewriting the Future of Retinoblastoma Care

After a year of publishing the #FamilyInSight Alphabet of Hope, we bring you the complete collection of 2020 Entries. This is the third #AlphabetOfHope. WE C Hope CEO, Abby White looks back at the alphabet’s genesis, and the insight, wisdom and motivation this literary project brings to the retinoblastoma community.

A young lady reclines in a hospital chair, holding a cute grey elephant with big eyes, while a nurse takes a blood sample from her arm.

How to Communicate with People Who are Blind or Vision Impaired – Part 3: Medical Care and Support

Most children with retinoblastoma and survivors have some degree of sight loss, and many experience awkward healthcare interactions as a result. This 3-part series shares survivor and parent tips for medical professionals working with people who are blind or vision impaired, Part 3 focuses on medical care and support.

A man wearing dark glasses walks with a woman along a road, guided by his cane and his hand at her elbow.

How to Communicate with People Who are Blind or Vision Impaired – Part 2: Assistance, Access and Technology

Most children with retinoblastoma and survivors have some degree of sight loss, and many experience awkward healthcare interactions as a result. This 3-part series shares survivor and parent tips for medical professionals working with people who are blind or vision impaired, Part 2 focuses on assistance, access and technology.

Two small group discussions are taking place around separate tables.

How to Communicate with People Who are Blind or Vision Impaired – Part 1: General Meeting and Interaction

Most children with retinoblastoma and survivors have some degree of sight loss, and many experience awkward healthcare interactions as a result. This 3-part series shares survivor and parent tips for medical professionals caring for and working with people who are blind or vision impaired. Part 1 focuses on general meeting and interaction.

A young smiling girl holds a certificate that states "First Day of Pre-School 2018-2019".

How to Support Learning For Children With Vision Loss

Most children with retinoblastoma experience some degree of vision loss that requires accommodations and support to reach their potential in school. Four vision professionals, who have experience of retinoblastoma, review the supports children may need, and what parents can do to help secure them.

Retinoblastoma Treatment and Vision – The Double-Edged Sword

When eye cancer is diagnosed early, it may be possible to save a child’s eye or even sight. But tumours and treatments themselves affect vision. Sandra Staffieri, orthoptist and Rb Care Co-ordinator at the Royal Children’s Hospital, Melbourne, reviews how different retinoblastoma therapies can impact the eye, and how parents can support their child.

Destigmatizing Vision Loss Within the Retinoblastoma Community

Vision loss is a major part of the retinoblastoma experience, but rarely discussed in depth within our community. Sassy Outwater-Wright explores the trauma of vision loss, the experience of living with reduced or no sight, and pathways to living well at every age and stage of sight-loss.