To celebrate Rare Disease Day 2021 (February 28), Takeda is highlighting stories of “Rare Star Resilience” and honoring inspirational members of the rare disease community. Through this campaign, we share the unwavering commitment of five patients, families, caregivers, healthcare professionals and patient advocates who continue to inspire us in a particularly turbulent time.
Rare is strong. Rare is proud. Rare is many. Rare is resilient.
We sat down with Rachel Callander, a speaker, author, trainer, artist, patient experience advocate, and mother of a child who suffered from a rare disease, to hear about the profound experience of parenting a child with a rare disease.
A message of resilience from Rachel on Rare Disease Day 2021:
Be seen, be heard, share your life, your passions, your uniqueness. As a global culture we need to stretch the idea of ‘normal’ as wide as possible, so that more people can be free to live their lives in the way that they want to, without fear, judgment or discrimination.
My late daughter, Evie, set my life on a trajectory I never could have imagined. She was born with a rare chromosomal condition called partial trisomy 9 and partial monosomy 6. She lived to be two and a half. In her short yet remarkable life, she taught me to live in the present, allowed me to meet hundreds of incredible people in the rare condition and disability communities, and awoke in me an identity as an advocate, speaker, and author. Evie taught me so much about what matters, and was the most beautiful little soul.
The two books I have written since she died are her legacy. Super Power Baby Project and Super Power Kids are photographic art books that celebrate the lives and abilities of children with a range of disabilities and rare conditions. These books challenge the deficit language of disability and difference to highlight the abilities, beauty and humanity in each child featured.
Rare diseases and this community is the most significant thing that ever happened to me! While coping with rare disease has been incredibly challenging, painful, full of grief – it truly is the most meaningful, beautiful, powerful and rewarding experience. I have grown and stretched as a human. It has expanded my heart, mind and beliefs about humanity. Diversity is incredibly important.
I’m a totally different person. I used to be a wedding and portrait photographer, and now my work involves helping healthcare professionals, parents, and people living with rare diseases, to become allies and partners. I deliver keynote presentations, workshops and programs about the importance and impact of language, and how to collaborate and communicate effectively, for better outcomes. I’ve met the most amazing people, who are also growing and stretching themselves. Collectively, the messages being shared in the rare disease and disability spaces are that of acceptance of difference, inclusion and tolerance. These values contribute greatly to a more compassionate, innovative, kind, and thriving community.
By trying new things and letting myself go a bit slower. Like so many people, all of my usual work disappeared quite suddenly, so learning new ways of working was really challenging at first.
But giving myself a whole lot of kindness and letting myself be a bit creative, and go slow – this has been the key to being able to continue the work I love. One of my favourite parts of the year was working with different rare patient advocacy groups and leading them through an online version of a workshop I run, on creating “Awesomeness Forms” for their children. Basically, an Awesomeness Form is an antidote to the despair, grief and frustration many parents face, when filling out Needs Assessment Forms (or similar documents) that are used to measure a child against ‘normal’.
Resilience is about being able to sit in discomfort, and move and grow in it. So much unknown, so much trauma, pain and grief. It is about being able to grow, despite so many challenges. Sometimes the growth is so small – but it’s about being able to acknowledge it and celebrate it anyway, no matter how tiny it might seem.
I’ve seen so many rare disease communities embrace new technology and host online conferences and meetings that would otherwise have been in person. They’ve created meaningful resources and a space to connect, even in the midst of isolation due to the COVID-19 pandemic. They’ve realised that this new way of connecting is actually really powerful, and maybe will continue to be long into the future.
I have been part of so many online conferences sharing my message of celebrating uniqueness, empowering parents, and teaching healthcare professionals, industry consultants, researchers, pharmaceutical representatives and scientists in the rare disease space to connect with rare disease families with humanity and dignity, through the use of language, active compassion and meaningful interaction and care. I’ve delivered workshops, keynotes and presentations all over the world at various events, from my home office, to places I wouldn’t be able to get to in our ‘normal’ world. It has been inspiring to feel more connected to this space over the last year, because of the determination and resilience shown by organizations and companies to stay connected and in service to this community.
It connects me to a life I was so proud of. Being Mum to a child with a rare condition brought out parts of myself I never knew existed. Sharing my life with a little girl who constantly amazed, delighted and inspired me, was an incredible joy and honour. So on this day, I am reminded of Evie, and all those out there like her. That there are millions of people that need to have their stories heard, their lives valued and needs taken seriously. This day encourages me to continue to do the work I am doing.
I am hopeful that more voices are being heard and shared. That there is more acceptance, more awareness, more active work being done to include all people. So that as many people in the world can experience a high quality of life, with no barriers to being able to reach their goals.
To learn more about Rachel’s incredible story and her books, visit her website http://www.rachelcallander.com/.