Rare Disease Day occurs on the last day in February each year to promote awareness amongst the public and decision-makers about rare diseases and their impact on patients' and families' lives.
Our son Joshua is one of those impacted by a rare disorder, WAGR Syndrome. In fact, it is so rare, it affects only one in a million children. Indeed, there are only 450 people in the entire world with this diagnosis.
Kids born with WAGR Syndrome face an uphill battle. They have serious eye problems and often struggle with learning to walk, talk, and keep up with other kids. Heartbreakingly, half of them will have childhood cancer before their 3rd birthday. In addition, they are prone to multiple surgeries throughout their lifetime. As a matter of fact, over half of Joshua's 12 surgeries occurred before he was 2 years old.
But every kid with WAGR Syndrome is a fighter and they work hard to live and grow. More importantly, they share beautiful smiles, give lasting hugs, and make an indelible impact at every journey.
The International WAGR Syndrome Association (IWSA) serves as a source of hope, support, and information, so the diagnosis doesn't have to be faced alone. Moreover, it is their desire to celebrate the joy, love, and courage our loved ones with WAGR/11P deletions give to us.
By donating to the IWSA, you can feel the hope and share in the pride. Your donation helps to promote awareness, stimulate research, and support families affected by this disorder.
Now YOU are "one in a million" too! Thank you for showing your stripes!