By Niamh Ryan - Reading time 1 min
On Rare Disease Day, Make-A-Wish® International is shining a light on the millions of children worldwide living with rare critical illnesses – and the profound, lasting impact a wish can have for them and their families.
Sisters Fatima, 12, and Layan, 6, are from Bahrain and both live with congenital lipodystrophy, a rare condition that brings daily challenges beyond what most children their age experience. With support from Make-A-Wish UAE, Fatima’s wish for a new laptop opened the door to creativity and self-expression, empowering her to pursue her ambition of becoming a YouTuber and explore her passions with confidence. Her younger sister Layan, whose energy and imagination know no limits, wished for a new play area in her home. Guided by her ideas, her home balcony became a vibrant play area filled with her chosen toys, colorful murals, and space to laugh, explore, and simply be a child.
Together, their wish journeys reflect the power of personalized, life-changing experiences that bring strength, joy, and renewed possibility to children with rare critical illnesses and their families. For children with rare critical illnesses, the path to diagnosis is often long and uncertain. Many families face limited treatment options, and a lack of understanding about their child’s condition. Rare Disease Day serves as an important moment to recognize these challenges while affirming the strength, resilience, and individuality of every child living with a rare disease.
Across the world, Make-A-Wish helps children with critical illnesses experience a wish – a carefully designed journey that brings hope, strength, and joy at a time when it is needed most. Wishes are not one time events. They are life-changing experiences that can help children build emotional resilience, strengthen family connections, and regain a sense of possibility beyond their diagnosis.
Children with rare critical illnesses represent a significant portion of those served by Make-A-Wish globally. While each diagnosis may affect only a small number of people, together these children form a powerful community – one united by courage, determination, and the desire to simply be a child.
Through a global network of local offices, staff, volunteers, donors, partners, and medical professionals – collectively known as WishMakers – Make-A-Wish works across borders, cultures, and healthcare systems to help ensure that eligible children with rare critical illnesses have access to a wish. This collective effort reflects a shared belief that every child deserves to be seen, supported, and uplifted – no matter how rare their condition.
On Rare Disease Day, Make-A-Wish International stands alongside children and families navigating the realities of rare diseases and reaffirms its commitment to reaching more children, earlier in their medical journeys. By coming together as a global community, WishMakers help ensure that hope is not rare – even when a diagnosis is.