When I saw this fascinating article in The New York Times, I immediately forwarded the link to Isaiah, one of ‘our’ wish kids who lives with complications and pain from sickle cell disease (SCD). Isaiah promptly replied, “"There are so many comparisons to our family's story! This article is finally giving sickle cell disease the spotlight it deserves. Thank you so much for sharing, you made my day <3.”
As a Make-A-Wish supporter who makes wishes come true each year, I thought that you may be interested in the incredible science, the researchers who are working to find a cure, and the young patients who bravely wait for medical protocols to advance. This article bares the struggle of a child and a family (since it is an inherited disorder there are often multiple cases within a family) who are suffering with terrible pain, progressive organ damage, and even premature death.
At Make-A-Wish, kids diagnosed with SCD that are experiencing severe or chronic complications may qualify for a wish. Our staff works closely with local hematology specialists to ensure all children with qualifying diagnoses and complications are referred to Make-A-Wish.
Advances in pediatric medicine mean that more kids are surviving cancers and other childhood diseases than at the inception of Make-A-Wish forty years ago this April. Our Mission is to create life-changing wishes for children with critical illnesses. Make-A-Wish grants wishes to kids suffering from critical illnesses – Including chronic conditions like sickle cell disease with complicating factors.
As for Isaiah, he further wrote, “Helen’s story is a miracle, and we wish her a full life of health and happiness. But there are so many more silent sufferers of this disease. For far too long, sickle cell disease has lacked the media attention and reporting needed to move the needle on funding, research and public understanding of the disease. This New York Times article is a giant leap in the right direction, and we are so thankful for Helen's courage.”
Listen to Isaiah speak about his 2004 wish to meet Catwoman: