Learning your child has aniridia brings a range of thoughts and emotions. The effects on parents are not talked about enough, especially regarding men.
We had an evening exploring parenting topics with 3 short talks and an open discussion for everyone to mark Aniridia and Fathers Day.
Most of our parent members are mums – so there was a special invitation to the dads in our community – and for mums to get their partner to attend alongside them. And, for patients to tell their parents to come. We wanted to hear fathers’ stories, and to share your parents experiences.
What to expect
We were delighted to welcome three speakers, each bringing a different perspective.
Harriet, Researcher
Harriet, an MSc Genetic Counselling student from Cardiff University, introduced a research project she’ll be carrying out with Aniridia Network. The study is looking at “What is the impact on family members of the diagnosis of aniridia in a child, and what would help?“
Later this year Harriet will be recruiting parents and other family members for interviews about their experiences. She will explain what the project involves and how you can take part. This is a fantastic opportunity for you to directly shape research that could improve support for families.
Mark, sighted father: “Looking back on aniridia – 30 years of learning.”
Mark, 62, is the father of Harry, 29, who has aniridia. He reflected on what he’s learned over almost three decades of supporting Harry — from diagnosis through childhood, school, and into adulthood — and the highs and lows along the way.
His main observations were:
- It’s a unique journey for each family
- Seek friendly professionals
- Aniridia provides challenges but it is what you make of it
Mark’s full career was as an engineer in the Royal Navy followed by a consultancy. Now he is working part-time to allow more time for my hobby, supporting scouting.
Simon, aniridic father of aniridic son: “Empathising with my son – Raising a child with anirida when you have it too”
Simon, 43, shared what it’s like to navigate aniridia from both sides, as someone having it and bringing up a child with it. His son is going through many of the same things he did growing up. Yet the world has also changed and mnay of the challenges new or differnet.
Simon has aniridia, nystagmus, optic nerve hypoplasia and foveal hypoplasia. He is married with one child and works as an IT engineer.
Conversation
After hearing from our speakers, we opened up for a group discussion. Mark’s and Simon’s stories encouraged others, to share your fears, approaches and recollections of parenthood, and family life with aniridia. There’s was pressure to speak, all were welcome to simply listen, as well as join in with questions, comments, and stories of their own.
Why now?
There are 3 important adjacent dates that we wanted to celebrate together, while leaving space for family gatherings on the Sunday:
- Nystagmus Day (20 June)
- Aniridia Day (21 June)
- Father’s Day in the UK (21 June).
Aniridia Network 