Accepting Charity for Chronically Ill Children

Raising children with chronic, potentially life-threatening illnesses comes with a host of challenges. Not only do these challenges affect the sick child, but they affect the entire family. No one escapes chronic illnesses unaffected, whether siblings, parents or the sick kids themselves.

There are many organizations out there that help families with sick kids. We have had experiences with special camps and Make A Wish. These organizations mean the world to our entire family along with the Brett Favre Fourward Foundation. These organizations made a difference in our lives when we really needed a respite from the medical concerns chronic illness brings to our lives. What does one say when someone voices the opinion that you should not allow your children to accept these gifts?

Until recently, I did not know that there were people out there who did not understand the mission these special places had in helping the families of special needs kids. I recently received an anonymous letter asking how many free trips and camps I expected to receive because I have two children with Shwachman-Diamond Syndrome. I was stunned and decided that I should write something explaining what these organizations have done for our family and why my children deserved to have their wishes granted and attend camp.

Having two children with Shwachman-Diamond Syndrome (SDS) means a life full of hospital visits and medical procedures. Shwachman-Diamond Syndrome is forever. It does not go away. Between the two of my children, they have been under over forty times total. They are scheduled to be put under anesthesia again this August for their repeat bone marrow biopsies. We are also traveling to Children's Hospital of Philadelphia this summer for one of my children to have some testing done. My children have been through a lot just in terms of medical procedures. They have also missed out on parties and fun because of illnesses and hospitalizations. My oldest, non-SDS son, has also had to have numerous birthday parties cancelled at the last minute because one of his brothers ended up being admitted to the hospital.