STORIES

Artist and activist with OI: Benjamin Mejia

Interview with Benjamin Mejía, artist & activist from El Salvador Who are you and what is your relationship with OI? I am Benjamin Mejía, I am 28 years old and live in the City of San Salvador, Capital of the Republic of El Salvador, Central America; Currently I am a Fourth Year Student of the…

READ MORE
[Image shows a gouache/ink/pencil cartoon illustration I made in my sketchbook. Against a black background, a yellow orb frames an illustration of me sitting on the floor, crooked white femme with glasses and hair in a messy bun. I look down lovingly at the ghost of kid-me sitting in my lap, and hold the back of her head gently. She looks back at me and holds juniper (fluffy black cat) in her lap. Around the orb is abstract decorative designs of yellow vines, sparkles, and dots.]STORIES

10 tips to parents of children with OI

Unsolicited advice for non-disabled parents of disabled children By Haley Brown, artist from the US Unsolicited parenting advice from someone who isn’t even a parent is…everyone’s favourite thing, right? I know, I know, it can be really rude and annoying. But I wrote this from a place of deep love – for disabled kids AND…

READ MORE
STORIES

Parenting a child when you have OI

Claudia Finis is a member of the German OI-association DOIG and a volunteer for the OIFE. With the input from two other parents (Janina and Sven) who have OI themselves, she wrote an article about parenting a child when you have OI. The article was first published in the German magazine “Durchbruch” (Breakthrough). It has…

READ MORE
STORIES

OI athletes at the Paralympics

The Spanish OI-organizations have identified many different athletes with OI who are competing in the ongoing Paralympics in Tokyo. The athletes come from Spain, Greece, The Dominican Republic, USA, Germany, Japan and Great Britain. We wish all the athletes best of luck! Below you can watch the campaign video #WeThe15 which was made to counter…

READ MORE
STORIES

Artists with OI: Erwin Aljukic

Erwin Aljukic is an actor, dancer, speaker and fashion journalist. Since 1998 he can be seen on TV, in the cinema and at the theater. In addition to acting, he studied fashion journalism and has been working as a freelancer ever since. In 2014 he devoted himself to contemporary dance. Aljukic has been a permanent…

READ MORE
STORIES

OI & resilience

Some say that people with OI learn resilience from an early age. Shani Dhanda from the UK is featured in a film about people with resilience. She was one of six millennials interviewed and filmed from around the world to bring to life—through her personal story, the key theme from the survey – resilience. Resilience…

READ MORE
STORIES

Pride & OI

Nikita has a rare form of OI, immigrant background and came out as queer one year ago. She’s now one of the faces of an awareness campaign about being queer and disabled in Norway. Nikita says she’s missing more knowledge about disability and sexuality from teachers and general practitioners. Photo shows Nikita in a PRIDE-parade…

READ MORE
STORIES

Life as a “Shadow Child”

Often siblings of children with a chronic illness are called “shadow children” because they live in the blind spot of their parents. They are often alone with their grief and put their own needs aside for their siblings’ needs. My name is Kristine Holm Laursen, but just call me Krisser. I am now 26 years…

READ MORE
OIFE

Founding Fathers and Mothers

In 2020, the founding fathers and mothers of three OI societies sadly passed away. One of them was the first person worldwide to initiate a patient organization for OI. Many were following her example, and some years later, the idea of founding a European umbrella organization was born. Former OIFE president Ute Wallentin, has written…

READ MORE
Translate »