Make-A-Wish International Marks Rare Disease Day To Highlight the Power of Wishes for Children With Rare Critical Illnesses

Make-A-Wish International is proud to join the global community in marking Rare Disease Day, an annual event on the last day of the month, dedicated to raising awareness about the challenges faced by those living with rare diseases, as well as their families and caregivers. By granting wishes to children with rare critical illness, Make-A-Wish brings lasting positive impacts to them and their families.

With 70% of rare diseases beginning in childhood, this month alone, at least 6,800 children across Make-A-Wish International Affiliates and territories will be diagnosed with a rare disease and become eligible for a wish. This equates to at least 82,000 children per year who face the overwhelming experience of facing a critical illness, alongside the additional challenges posed by rare diseases.

For many families, just receiving a diagnosis can be a long journey as relatively common symptoms can mask underlying rare diseases. When the diagnosis finally comes, it can be life-altering for both the child and their family. Parents face immense mental and emotional burdens as they navigate complex care needs, advocate for their child, and cope with financial and logistical pressures. The children themselves can face challenges beyond physical symptoms, including anxiety, feelings of isolation, and the struggle of coping with pain and fatigue.

Wishes have been shown to provide a unique array of benefits which enhance the physical, psychological and emotional well-being of both the wish child and their family. The Wish Journey provides children with rare diseases a chance to experience hope and joy beyond their everyday challenges.

“For families who often feel they must fight for every resource and support, the wish experience is a restorative gift,” said Luciano Manzo, President & CEO of Make-A-Wish International. “By taking care of every detail, Make-A-Wish creates an opportunity for the family to focus entirely on their child’s joy and make cherished memories together.”

One such family is that of 5-year-old Oliver from the UK, who lives with Duchenne’s muscular dystrophy, a rare and degenerative condition. Whilst he’s able to walk short distances now, Oliver’s condition will likely see him unable to as he grows older. That’s why his wish to go sightseeing in London was so significant to him and his family; Oliver could enjoy seeing all that London has to offer before his condition takes a further toll on his body. Oliver’s Dad described the wish experience as “incredible,” adding, “we shall never forget the experience that Make-A-Wish has given to us as a family”.

This Rare Disease Day, Make-A-Wish International invites the public to get involved in helping grant life-changing wishes, creating lasting positive impacts for children with critical illnesses around the world.