Sibling Support Resources
While much attention is – rightfully -- given to those directly affected by urea cycle disorders (UCDs), we feel that it’s also important to recognize the significant emotional, psychological, and social challenges faced by the siblings of individuals with UCDs.
Those with young children might find our Kid’s Guide to Understanding Your Sibling’s Urea Cycle Disorder helpful. Click below to read the guide.
The Warner Siblings
Growing up in a family coping with a rare medical condition can present unique difficulties for siblings.
Emotional Toll: For siblings, living with a brother or sister who has a UCD can be emotionally draining.
Shift in Family Dynamics: The health needs of a child with a UCD can lead to significant shifts in family dynamics. Parents may become hyper-focused on the affected child, leaving siblings feeling overlooked or less important.
Shift in Social Life and Identity: Siblings of individuals with UCDs often experience social isolation, which can cause feelings of loneliness or exclusion.
While there are many struggles, being a sibling of someone with a rare disease can also bring a deep sense of empathy, resilience, and perspective.
NUCDF recently released a blog diving more into this issue. Click below to read it.
The McCracken Siblings
Books on the Topic
Below is a compilation of books that we've found that might help siblings growing up with someone with a rare disease. This is not an exhaustive list.
Rare But Just Right: My Sweet Sibling and I by Chloe Koeppen
I am Lucy by Chuck Neighbors
Extraordinary! A Book for Children with Rare Diseases by Evren and Kara Ayik
Getting to Know You (Sibling Stories) by Abigail Turnwald and Dr. Jessica Duis
Emotions of a Super Sibling by Tamara Cullere
My Sister is a Zebracorn by Amber Conn
Living with a Brother or Sister with Special Needs by Donald Meyer and Patricia F. Vadasy
The Other Child: The Exceptional Siblings of Special Needs Children by Linda Scotson
What About Me by Brennan Farmer and Mandy Farmer
Special Brothers and Sisters: Stories and Tips for Siblings of Children with a Disability or Serious Illness by Annette Hames
Billy's Sister: Life when your sibling has a disability by Jessica Leving
The Abilities in Me: Superstar Siblings by Gemma Keir
The Sibling Survival Guide: Indispensable Information for Brothers and Sisters of Adults With Disabilities by Don Meyer (Editor) and Emily Holl (Editor)
Thicker Than Water: Essays by Adult Siblings of People with Disabilities by Don Meyer (editor)
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