Hard facts

March 27, 2010 at 11:47 am

I think that this is an admirable spirit and hope for Emily, but I would like to suggest that Make-a-Wish may not be the best organization to approach. Make-a-Wish officially says that children eligible have to have “life-threatening medical conditions” and that the conditions have to be “progressive, degenerative, or malignant conditions that have placed a child’s life in jeopardy”. As a physician of children with cancer, I have filled out a lot of these forms over many years for several “Wish” organizations. Some “Wish” Organizations used to say that a child had to have a significant risk of not reaching his/her 18th birthday. CIDP, terrible as it is, is not considered to be a life-threatening illness–it is quality of life threatening. In reading what Kelly has written, the sticking point for Emily to get a “wish” is her neurologist. I also have been in the tough situation of not “certifying” an ill child to be eligible for a “wish” for Make-a-Wish because what that child had did not met the criteria of life-threatening listed for that organization and “life-threatening” IS different from chronic or debilitating. There are tens of thousands of wish requests a year. Make-a-Wish says they grant a wish every 40 minutes which means about 13,000 wishes a year (if I did the math right). Kelly says that it can take up to a year to get the wish, because they have to get funding for and arrange each wish and kids that are dying HAVE to jump to the top of the list at times or they would never get theirs. There are different interpretations of eligibility, so several “wish” organizations have changed their criteria to have the same wording as Make-a-Wish to help make it clearer.

What I might gently suggest is to look at other “wish organizations”–there are hundreds throughout the country to find ones that permit chronic medical conditions or debilitating medical conditions that are not also “life-threatening”. You can even google “wish organizations” to get some of these. Look at the criteria to see the wording and make sure that the medical condition of the child does not have to be “life-threatening”.

Please know that I understand very well that something does not have to be “life-threatening” to have a tremendous impact on the child and family and that some physicians either do not read the fine print or chose to ignore it and sign despite the criteria of “life-threatening” as well as some organizations have different eligibility. I am not trying to throw water on these efforts, but just to say that Make-a-Wish requires a physician to sign that something is “life-threatening” and no amount of appeals to Make-a-Wish will make the wish happen if a physician will not sign the form that the condition is “life-threatening”. As a physician working with really ill children, I chose to be honest and accurate in answering this even if occassionally a child I really, really want to have a wish cannot get one through that organization. Please check into other organizations or ask if there is another way to get this wish to happen. Some require only chronic illness not that the condition is life-threatening. One is “Dream” something. There may also be ways for sponsors to step up so that a child gets a wish experience.