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.
My 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.
Kids born with WAGR syndrome face an uphill battle. They have serious eye problems and often struggle with learning to walk, talk, and do all the things other kids do. Half of them will have childhood cancer before their 3rd birthday.
But every kid with WAGR syndrome is a fighter and they work hard to live and grow. More importantly, they share beautiful smiles and give lasting hugs.
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. Indeed, it is their desire to celebrate the joy, love, and courage our loved one 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 rare and showing you care!