At Global Genes one of the concerns we hear most often from rare disease parents is how to best understand and support the siblings of the person with a rare disease. Parents often feel they are neglecting the needs of these healthier siblings, forced to spend most of their attention on the medically complex sibling. The phrase “Glass Child” has come to describe the sibling who may feel unseen or less important in comparison to the focus given to their sibling with chronic care needs.
The siblings may feel guilt that they must not do anything that might add to the burden their parents are already handling. They will likely feel isolated since their life is not like most (or any ) of their peers.
The emotional anxiety and stress from hyper-vigilance and uncertainty around if or when their sibling’s condition may become more severe weighs on “healthy” siblings just as it does on parents. This can be emotionally exhausting. Rare siblings may feel their own needs are coming in a distant second or get neglected entirely. On the positive side we also see enormous maturity, empathy and compassion in these rare siblings.
Noah Siedman, Rare Sibling
Global Genes has held many presentations over the years on the concerns of and for rare siblings. At the 2024 RARE Advocacy Summit a panel on RARE Siblings offered many great important insights. One simple yet striking message from Noah Siedman (who had a brother Ben with Sanfillipo) was “Forget normal” for the siblings. Many rare parents have gotten their heads around the idea that their rare child’s life will not be normal. And maybe even that their own lives as parents will not be normal. Yet many still cling to a goal of making the lives of the other siblings a normal one. Too late. That isn’t going to happen. There is no normal. For anyone in your house. And at least according to the siblings on this panel, that’s okay. They never expected normal.
You can watch that session here.
And then be sure to explore many other resources we think will help rare siblings.
More sessions from Global Genes
- The RARE Siblings Experience: Patient Advocacy Summit 2022 Session
- Rare Life: Siblings, Stories, and Life on the Sidelines – Global Genes RARE Patient Advocacy Summit 2021
- RARE Together 2020 Film Selections from The Disorder Channel: Sibling Experience
- 2017 Summit session: Caring for Siblings of Kids with Rare Diseases
Madison McLaughlin, Rare Sibling
“One of the biggest parts of my identity has been that of a caregiver.
And that was something I didn’t really put a label to, until therapy.
… But who am I as their sister outside of caregiving and also who am I as a person outside of taking care of people?”
– Madison McLaughlin
from Rare Life: Siblings, Stories, and Life on the Sidelines
Global Genes RARE Patient Advocacy Summit 2021
More Resources for RARE Siblings
- The impact of RARE disease on siblings – from Rare Revolution Magazine
Impact on Siblings
- Families With Glass Children Must Not Throw Stones – Psychology Today
- The Impact of Rare Disease on Siblings and How to Support Them
- Courageous Parents Network resources for the needs of siblings.
- Health-Related Quality of Life and mental health of families with children and adolescents affected by rare diseases and high disease burden: the perspective of affected children and their siblings.
- The Impact of Rare Disease on Siblings
- Rare Siblings issue number 31 of Rare Revolution Magazine
Organizations for Siblings
Videos
- Dr. Al Freedman on Rare Siblings from a recent Global Genes webinar.
- Unconditional, Raising a Glass Child with a PACS1 sibling – short film
- Once Upon a Gene TV – Super Siblings Special
Rian Edwards, Rare Sibling
“Everyone in my family knew and I didn’t. And I felt so excluded and out of the loop. … I thought if nobody’s talking about it it can’t be that bad. (Later my mom said) “We didn’t want you to worry…And for a very long time I thought that I was going to wake up and he was not going to be at the house anymore. … I didn’t speak to any of my friends or my teachers because I was afraid I was going to break down and cry in front of them and I didn’t want them to worry about me either.”
– Rian Edwards
From The RARE Siblings Experience: Patient Advocacy Summit Session in 2022
Podcasts
- Bailey Wallace: The sibling experience and being at peace with the diagnosis. – Smiles Included podcast
- Having a Sibling with a Rare Disease | A Sibling Shadows podcast Interview with Dr. Al Freedman
- Empowering the Neurotypical Sibling – Stronger Everyday podcast
- The Glass Child – Being a Sibling to My Rare Disease Sisters with actress Madison McLaughlin on the Once Upon a Gene podcast.
- Siblings Caring for Loved Ones with Rare Diseases – on the I Care for Rare podcast
Felix Townsin, Rare Sibling
“As a sibling I also didn’t get the most attention but I knew my parents loved me. Even if they weren’t paying attention I knew there was a good reason. I was fine because of that.”
–Felix Townsin
from Global Genes 2024 RARE Siblings panel
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