The problem with Make-A-Wish’s new policy for children with CF
A former recipient of the charity shares his thoughts on a disappointing change
I’m a Make-A-Wish kid. Rather, I was one. I’m now 30, but I had my wish granted 12 years ago because of my cystic fibrosis (CF).
For those unaware, the Make-A-Wish Foundation grants children with terminal illnesses and their families a once-in-a-lifetime opportunity to do whatever they like, within reason. They might meet a famous athlete, like professional wrestler John Cena, who’s granted more wishes than anyone in the foundation’s history. Others have gone to a Disney park for a few days to distract from the harsh day-to-day realities of having a disease. It’s a noble charity that creates moments of happiness for children facing intense suffering.
I first heard of the Make-A-Wish Foundation when I was about 10 years old. My friend had cancer, and his wish was to meet Yankees legend Derek Jeter. Not only did Jeter grant my friend his wish, but they kept in contact until my friend’s death in 2005.
My admiration for those who volunteer at the foundation is immeasurable, and I have a deep respect for celebrities who give their time to these children, providing them a moment of solace and unforgettable happiness.
A disappointing change
While sitting at my table this past weekend, one of my wife’s best friends, who’s become a close friend of mine, sent her an article from BuzzFeed News regarding a policy update for the Make-A-Wish Foundation. Starting in January, children with CF will no longer automatically qualify for a wish because of the vast improvements in life expectancy and medicine for our community. Now, CF children will be handled on a case-by-case basis to see if they qualify for a wish.
I question whether that’s the right thing to do.
The wondering stems from a lingering thought in my head: If this policy were around when I was a child, I likely wouldn’t have qualified for a wish, as I was and still am quite healthy for a person with CF. My granted wish was for a MacBook, a variety of software, and a printer for my photography. My original request was to spend time with then-President Obama, but I guess he was busy being “leader of the free world.” No hard feelings.
Healthier kids with CF these days deserve to be granted a wish as much as those with severe symptoms. Yes, some kids suffer more than others, and they should get to see Disney World or meet someone they’re a fan of, like NFL quarterback Patrick Mahomes. But so should those who are healthier. We’re all in the same CF family, doing multiple rounds of treatment and taking dozens upon dozens of pills just to survive while also managing school and a social life. We might not be as sick, but life is absolutely still hard for us.
One reason for the policy change, according to the article, is that the number of lung transplants for CF patients has gone down from 271 in 2016 to 52 in 2021. Another reason is that 60% of CF patients are now adults. We should celebrate these goals and achievements, but not at the expense of children in the CF community. My parents, despite being able to live a comfortable middle-class life, couldn’t afford a MacBook, let alone all of the software gifted to me.
Yes, I’m healthier than the average person with CF, but my life still looks much different from the average healthy person’s. I have to wake up and do my physical treatments, which can render me exhausted before my day has started. I have to take 40-something pills a day just to function. And while I may have a rare CF mutation that makes me healthier than many other CF patients who are suffering, I cannot take the CF modulators that have changed thousands of lives. There are kids with CF who have rare mutations, just as I do, and cannot access these modulators. I believe that they, too, deserve a moment of happiness away from the drudge of their daily medical life.
Kids, no matter their level of affliction, are still scared of dying young. I may be too old, but if I had another wish, it’d be that every kid with CF be as lucky as I was.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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Comments
Judy McIntyre
I agree. Any kid with CF, regardless of the degree, is still struggling with daily challenges presented by their mutation. Top that effort with the threat of a short lifespan. It is a big burden for tiny shoulders to bear.
The Make-A-Wish opportunity can absolutely lift them into a new stratosphere of hope and excitement….the freedom to ‘just be a kid’ every time they look forward to their special Dream experience and every time they reflect back on it.
Let’s do what we can to help make childhood magical for every child!
William Ryan
I agree!
Theresa Oesterle
Thank you for this article. I am a hands on grandmother to my CF granddaughter. You are right, You look OK on the outside but lots are happening on the inside. We as a family have struggled with the disease from her birth and hospitalizations and so much more. I hope the CF foundation advocates for all the CF community.
William Ryan
I hope they do too!
Helen Palmiero
Will, you are absolutely right. I read that article a few days ago on my Google feed and felt my blood start to boil. How dare a CF child be judged on his or level of illness! I have a few very serious illnesses also but thank God do not look like I do. I wish these corporate bigwigs - not the volunteers - who make these decisions would think for a moment what life would be like for them or one of theirs if they were walking in these shoes and were denied a precious bit of joy in their lives. I could rant on and on but no bigwig would listen to me either. What goes around comes around. Love ya, Will
William Ryan
Love you too, Helen!
pamela cook
I agree completely! Our granddaughter who is now 22 was able to have her Make-a-Wish granted last year. Yes, it was delayed due to Covid but she was so very thankful for most of this experience. She was told about it by the Drs. and social worker when she was just a small child. She was told she would qualify but that was retracted on and off by the social worker. She was not always a compliant child regarding her therapy but we as her family made her comply. She looked up to her fathe,r as children should, but he was extremely unstable and mom was overwhelmed often. We, as her grandparents assisted our daughter and grandchildren to provide nurture, care and support. Mom (our daughter) had brain surgery (tumor) over six years ago. I know, sounds like a Greek tragedy, but she came through it well and we were all so thankful and blessed! In recent years our granddaughter is in the hospital as much as she is out. I really resented it that they would bring up the, Make a Wish enticement only to want it dropped. I couldn't understand how they thought a child could enjoy the experience of their wish when they would increasingly have to fight for decent lung capacity. Exhaustion was the new norm by the time it came to fruition. With the exception of things not being in place for her plane ride to L.A. and the nightmare flight because of it, she still enjoyed the experience after much rest. The children's portion of the CF center handled it poorly.
William Ryan
Sorry to hear about the CF Center! Hopefully they've been able to find a new one.
Cheryl Connell
I agree. Children with chronic/terminal illness should all be eligible of a Wish. I have two daughters who have CF and when they were young they received a wish to Give Kids the World in Florida. It was magical. Something that our family needed. People with CF have a lot of treatments to do, a lot of pills to take, By the time all of the treatments were done, the morning was over. There is constant care that goes on every day. Going in and out of Boston for appointments every three months, paying for parking, food, etc. adds up quickly. Money is tight with families who have terminal/chronic children. Granting these families a wish for them to get away from it all for even a few days is "magical". You just feel so relaxed because you are away from the every day routine. CF causes a lot of medical issues, one of my daughters has had a liver transplant already, and is also going to need a kidney transplant from the CFRD that she also has. On top of that, both of them have lung issues where they need "cleanouts" at least once or twice a year. If you ask anyone who has this terminal illness, it is exhausting and hard to have a "normal" life like anyone else. The "whole" family needs a break and granting them one wish will be a life changing experience for them. I have seen kids with other medical issues get more than one wish. They got a wish from three different organizations. I do not think that is fair. Not everyone with CF is the same. There are different degrees of CF. I have to children and they are different with their complications from it. Make a Wish needs to keep giving these children wishes no matter what.
William Ryan
It's exhausting. At least they got a wish and your family had a nice time!
Colleen Longhi
My 24yr son was born with Tracheobronchomalacia with Innominate Artery Compression. He was tested for CF at 6years old, we were simply told he was negative. He was tested again at 8, again negative. He was tested a third time at 15yrs after his 10th pneumonia. He was diagnosed with CRMS Cystic Fibrosis Related Metabolic Syndrome. He pancreatic insufficiency he had failure to thrive throughout the years. He had 10 pneumonias, 7 bronchitis, 16 croups and 2 RSVs. CRMS entitled him to an airway clearance vest and he follows CF protocol for treatment.
He was denied Make A Wish. I hated that for him. I thought it could be his light.
William Ryan
I'm sorry to hear that! Hopefully he's lived a fulfilling life in spite of the MaW denial.
Don Kreis
A child born today with Cystic Fibrosis can expect to live into her mid 50s and beyond. The Make a Wish Foundation grants wishes to children with terminal illnesses. The organization’s decision, that everyCF kid will no longer AUTOMATICALLY qualify for a wish, is a reason for the CF community to celebrate rather than whine.
My daughter got her wish about a decade ago and, frankly, I was embarrassed. I knew full well that she was destined to live a long and successful life and, indeed, today she’s a college junior planning on law school after graduation. The meta-lesson from all of this is that people should direct their charitable resources toward causes that drive permanent systemic change — e.g., curing diseases like CF and Sickle Cell Disease — rather than supporting superficial gestures that tug at people’s heartstrings.