Years ago I had the wonderful experience to help two different families at two different times. Little Anthony and Kevin both had cancer, incurable cancer. The results were known and even though both gave a valiant fight and underwent almost every treatment available, eventually the battle was lost.
With each day that went by I witnessed their lives slipping away and even to witness them smile at their weakest moments were enough to brighten a day. When a fund-raiser was completed and a check was presented I can still to this day hear Little Anthony’s (as his parents called him) voice in my head, “Damn, that’s a lot of money.”
When Rob graduated, I thought of Little Anthony’s family as they were both the same age and surely we have had the wonderful opportunity to witness and enjoy our son, they were not so lucky.
Years after I ran the event for Kevin, a woman stopped me in a 7-11 and she said, “Tom, you may not remember me. I am Kevin’s mom and you helped us years ago.” We hugged and she told me what was going on in her life and how much she appreciated all that we did.
We were never experienced in any such way that compared us to what these families went through.
If you do not know about the so many pediatric cancers, count yourself lucky. When it’s a terminal, malignant, progressive, and degenerative diagnosis; it is just overwhelming to watch, witness, and share.
I remember someone asking me about one of the organizations that grant a wish for kids with such diseases that Kevin and Little Anthony suffered with and if I thought kids with type 1 diabetes were eligible.
I answered ‘no’ immediately. I answered no because I felt that if anyone on this earth wanted and/or deserved a wish to be granted; it would be these two little boys and their families. I’m not comparing diabetes to cancer, and won’t. But in as much as I completely understand what it is like to have two kids with diabetes, and I know all of the management needed; and know the fears; and just completely understand; I would never think for a moment that what we do on a daily basis was the same life threatening and terminal situation that would warrant a utilization of a granted wish. Most important is that NO ONE ‘DESERVES’ anything; they are granted at the goodness of the person or organization granting them.
To me, TO ME, it just isn’t.
Is diabetes life threatening. Yes it is. Is it a life threatening terminal disease with no chance at a quality of life as others have? No it is not.
Now one can pick apart the words as life threatening and/or quality of life and try to make it a crystal clear-cut meaning but the truth is—-it isn’t crystal clear. My kids do not have a life-like kids who do not have diabetes and neither do we as parents. But we also do not have the same life as those who are literally dying with each day that goes by; they are not growing weaker with each day that goes by; they are not on a time-table that will snuff out their lives in six months. Yes, I know that IT COULD be snuffed out; but it is not a predictable end.
Again, recently, someone asked me if I thought that our children are ‘deserving’ of a granted wish? I found that some parents were quite set in their thought process that an organization should be granting wishes to kids with type one diabetes. No they shouldn’t. Why? Because they said they shouldn’t.
Now before some of you want to hang me; just keep reading until the end.
There is a Board of Directors that have set a criteria for these type of organizations and Make-a-Wish is only one of many such organizations. But it is clear that if a child does not have a progressive, malignant, and degenerative disease; they do not qualify for a wish. Quite simply; our kids do not.
There must be a line drawn that allows a gauge to decide who gets a wish and who does not according to the various groups I spoke to preparing for this article. That line in the sand is not an easy one. It is drawn because there MUST BE a divide and no matter where THAT DIVIDE is set, someone will asked it to be moved once again. So most groups draw the line and do not move it. It is not for a lack of compassion, it is an act of practicality.
Another commonality from the organizations is that there are not enough funds to grant all of the wishes that they would like to grant to those that fit the criteria they have set, much less trying to stretch the parameters to include additional children living with other diseases.
I’m not saying what our children live through is not horrendous, I’m saying organizations have the right to set their own criteria and it should be respected. Almost any group that is created, or has been created, was started because the group felt that the existing organization(s) did not fulfill the need adequately on what they found/deemed to be important.
So if you believe, and believe strongly enough, that children with type 1 diabetes should be allowed to request a ‘granted wish’, I would suggest that you begin such a group. There are groups that create wishes from a life experience to supplies to clothing. Why can there not be one for diabetes? That is question for you to answer.
Kids with diabetes, in most cases, are not adequately considered for a college scholarship based on a disability. Those that grant these scholarships grant them based on those who have overcome incredible odds; sounds like our kids doesn’t it? But alas they are not considered in any place that I know of giving scholarships based on overcoming a disability; and feel free to enlighten me if I’m incorrect.
With that in mind, the Diabetes Scholars Foundation was created. Guess what their number one criteria is? Yup, you must have type 1 diabetes. Now they could have spent years trying to get groups and organizations to grant a scholarship; or they could do something about it NOW. In 2008 they gave 18 scholarships and in 2013 they gave 49.
So the point of my story today is not just about whether kids with type 1 diabetes are deserving of a granted wish; my point is that here is an opportunity to fulfill a need if you think it is needed strongly enough.
Years ago there was the American Diabetes Association; Lee Ducat thought there should be more focus from an umbrella organization to fund type one research; and she and her friends created (what is now called the) JDRF. Barbara Singer and her friends believed that there should be place where actual science was being done solely dedicated to curing type 1 diabetes and they created the Diabetes Research Institute.
So if you think that something is not being done that needs to be done…….make that wish come true.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.
24 replies on “Do Kids with Type 1 Deserve to have a Wish Granted by Organizations?”
I know people are going to “hang” you so I wanted to be the first to say….Very well said! I agree. And my daughter is a 12-year-old T1 herself.
I hope it opens a dialogue. And I thank you for chiming in.
Speaking as someone who was a kid once with T1D (& of course still with T1D as an adult now) – and as a multi-year volunteer at a pediatric hospital & for many charities – no, kids with type 1 don’t really qualify for Make-A-Wish or similar organizations’ missions. Quite simply we have hope where others don’t.
Do I think I should be granted a wish through Make-A-Wish for diabetes? No. Why because I believe it is for children with life threatening or terminal illnesses (cancer, CF, heart failure, genetic conditions that lead to a shorten lifespan). Although, there are children that are still living years after getting a wish. I think if Make-A-Wish is willing to fulfill a request for a child with diabetes then I’m not one to judge, but it just wouldn’t be feasible if every child with diabetes was approved nor do I think it is necessary unless there are additional extenuating circumstances
Also, I would like to point out there actually is an organization that grants wishes to kids with chronic illness, whether it be physical, emotional (psychiatric), or medical. It’s called Dream Factory Inc. So this would include diabetes, and might be a better fit than an organization like Make-A-Wish.
http://dreamfactoryinc.org/
Thank you for sharing the name of Dream Factory and thank you for your words. I love that ‘you are not one to judge”. I agree—if, for whatever reason a ‘wish organization’ chooses to, or rejects, a wish—it is surely their call either way…..thank you for the reminder.
I’m a mom of a T1D, and a pediatric oncology nurse. It’s difficult for all of us to watch our kids deal with adversity, but my son’s reality is not the same as that of the children I care for at work. I don’t believe my son needs or qualifies for a wish. As he said to me after diagnosis when I referenced getting him healthy again,”Mom, I am healthy. I just have diabetes.”
Thank you for your input Lisa.
I always enjoy your insight Diabetes Dad! We think a lot alike. I did just as you said, and started an organization for Type 1’s back in 2007 for just the reasons again, just as you stated. There was nothing out there with my vision. It’s called the Kids With Courage Foundation. Your comments made me think about when KWC was a dream of mine. I wanted to provide help in a way that wasn’t being offered to our T1 kids and families. So, way back then I thought of scholarships (before CWD Scholars). In fact, I recall talking with that group about my vision. It was decided at the time, that scholarships would be cost prohibitive for us—a small, start up group with no ties or connections in the diabetes world, but with lots of passion. So, we provide bundles of encouragement to children in Missouri and Kansas with what we call, our ‘Crate, Full of Courage’. To date, thousands have been delivered. We haven’t forgotten about the scholarships as we know families who must buy expensive medications and pay for quality medical care and treatment are in need. Kids With Courage will offer scholarships eventually (as funding allows) beyond the one we were able to provide to a young lady in Ohio a few years ago. Any support we could receive from the diabetes community would be appreciated—even if it’s just liking our Facebook page or a few words of encouragement. Keep up the good work Tom, and we will do the same!
I love this!!!!!
You are living proof of exactly what I was talking about and I would like to know more about your organization—-HOW WONDERFUL!
Thank you for sharing.
I’m so glad that you bring this up because I think I may have been the one to start the discussion recently among our peers. I applied to Make a Wish recently, not knowing the criteria, only because a former employee at Make a Wish who’s son is a type 1 made a point of telling me that her son was granted one.
I sincerely wish she had never shared that with me.
It set up a domino effect and dominoes have a habit of falling down spectacularly.
I asked my son to figure out what he might wish for if he qualified because he takes a long time making up his mind about anything. He never heard the “if”.
Dreams are great to have but having them dashed is awful. Watching someone you love have their dream dashed and knowing it is partially your fault is indescribably depressing. By opening my yap about what might come about, I failed my son twice as much. By asking about it on facebook, I opened myself up for criticism. I received the responses as if they were negative even if they were not meant that way. It made me wonder why it seemed that every other Type 1 kid I read or hear about is doing so much better with their self care and control than mine. It made me wonder why so many T1 parents talk about their frustrations with their kids diabetes and yet their kids all seem to be athletes, straight A students, advocates straight from DC or all of the above. Is there such a person as a kind of stepford Type 1?
Exactly what the criteria is for Make a Wish I will not learn until I speak with our endocrinologist who fills out the forms for MaW often. We did not qualify. I have mixed feelings about that. I figure it is because he isn’t in an immediately progressive terminal state. What parent wouldn’t be happy about that? That another more qualified child will get their wish, I am very happy about. That Type 1 kids like mine can’t have their dreams fulfilled leaves me quite depressed.
I applied because my son is not an average type 1, he has other issues that make the likelihood of his having a short life pretty high. Two others nearby to us have died under similar circumstances. So the fear is very real indeed. The temptation to apply with the possibility of giving my son something he dearly wants that is out of our financial reach was too much to resisit. So I did what I could by applying. The only good thing so far about this experience is that I will find out the criteria and share it with other parents of T1Ds. Just so they will not have to wonder if their child could have qualified and they didn’t try.
Perhaps another good thing may come about. Perhaps those who have influence, power, money and ability will start something for type 1’s of all ages who have a seemingly unreachable wish to fulfill. I do hope the criteria will be completely spelled out on the website and that those applying for someone else keep their lips firmly shut about it. Live by my pitiful example.
And as always, if these people need help, I’m IN!
This is something that goes back a long way and discussions have taken place. It is not just a comment to yours (I sent you an email). Cases are on a case-by-case consideration and I DO hope that someone can help in your case. See my email –I provided some place for you to try. Regards always and thanks for writing.
I agree with you that we don’t need these kinds of wish-foundations. The foundations often structure the wish as a “last” wish (without using the actual word), or as a glimmer of sunlight to hide a bigger shadow. Diabetes isn’t like that.
My wish is to see my two young kids grow to become independent and to live happy and fulfilling lives of their own. By my calculations, I’ll be 58, and will have been a Joslin 50-year-medalist for a year already, when my youngest finishes college – assuming diabetes isn’t completely eradicated by then (if it is, of course I’ll gladly take it!). It’s possible to make that wish happen, and with every ounce of strength, motivation, and willpower I have, I’m determined to do it.
Well, since I blogged about this exact topic yesterday, I feel an obligation to respond here. I believe that the mission of Make A Wish is misunderstood. I know of individuals who have received wishes, whose severe health conditions qualified them even though they were not actively dying… without proper treatment, they would die eventually from the condition they have (just as a person with T1D would), but given that they are receiving treatment, well, frankly, they are functioning much better than my own daughter with T1D. I did not apply for a wish for my daughter; my question about eligibility was raised when I asked if T1D was even on the list for consideration (I assumed it was not). I certainly respect an organization’s right to set its own eligibility criteria. Of course, there must be limits and lines drawn to determine who qualifies for a wish and who does not. However, my mission in approaching the MAW Foundation is not to sway any decision on my daughter’s behalf (remember, I have not even applied for a wish for her, nor mentioned it to her as a possibility)– it is to EDUCATE the people in charge that T1D is a severe medical condition that should not be “written off” as something less than that. To state that T1D is not a life threatening condition is simply false. To state that it is not degenerative is also false. Maybe T1D will never make “the list” of qualifying medical conditions, but I will feel better having tried to educate people about the nature, impact and severity of this disease.
I am type 1 and I personally feel that we should be able to have a wish. There have been countless times where I haven’t been able to do something (trips and vacations included) because of my diabetes. On MaW website it states “life threatning” and Type 1 Diabetes does fall in that category.
Thank you for reaching out—-you raised the question which I posted today……thank you for your input.
My daughter is a type 1 diabetic and has been for the last three years. She just came home from the hospital as she was in DKA monday morning. To say that diabetes is not a life threatening illness is an insult. I almost lost my daughter this week. Yes, kids with cancer are extremely sick and it breaks my heart for them and there family’s. But how is their medications and treatments any different than a type 1 diabetic? Each illness’s treatments are a way to keep our children alive. Because in both situations if the children didn’t have them, they would both die. My daughter is 12, And already has complications from this illness that she should in no way already have, but she does. Am I saying that she should get a wish? I don’t know but it sure as hell would give her a little hope. All she has ever wanted was to be a marine, and now she never can. Her dreams were shattered. To say a child that DOES have a life threatening illness can’t have a wish because sorry your just not dying enough is cruel. But on the other had I understand there has to be rules and lines. But I also know children that have had a MAW and ended up in remission and cancer free. It’s all a matter of perspective I suppose. I am not saying anything out of anger or trying to be negative. I just wanted to give my 2 cents. Not that it means much more than that in the long run.
No more or less than my two cents as well. Ours are but thoughts.
My friend Doug was told that he could never get his pilot’s license. It was impossible. Doug now has his pilot’s license. It may seem impossible. But Doug now has a license to fly with T1 diabetes.
No one said the road would be easy but I always ask, when change is needed; how bad do you want it?
Food for thought.
My son has Type 1 and Autism, unfortunately a more and more common co-diagnosis . I found this page because i was wondering if my son qualified for MaW or not. Deserving??? I won’t even answer that question, all I know is that he did not “deserve” either Autism or T1. I know many parents of children with T1 with and without Autism and all I can tell you is that the combination changes everything. We are blessed that our son is verbal and can sometimes communicate is he is feeling low, but usually a low or high blood sugar is only noticed by extreme behavior in Autistic children. Pumps are out of the question because of sensory issues etc, My sons needs are great enough that my husband has had to quit working outside the home to meet his needs. So. I’m going to change my mind and say I think in our case, yes, but of course organizations have to draw a line. Im glad I found he doesn’t qualify before applying and am happy to learn about Dream Foundation.
Until I have walked in every person’s shoes; I will render decisions that I have no basis to comment. It has guided me well. May you go for, and find, what you need to for the best things for you and your family. Thank you for your honesty and your compassion—-it was felt in every word.
Yet Make-A-Wish grants wishes to kids with cancer that has a 80% or higher survival rate. But not for kids with Type 1 diabetes. The kid who may have the ability to have a “quality” life, but no one considers that it is for the REST of there lives. That they will have to poke them selves for decades. Will have to give shots, watch what they eat deal with bias from people that have no clue what the difference between Type 1 and Type 2 are. Deal with bullying because of it. For the REST OF THEIR LIVES. But hey, the kid with cancer that has a almost certain survival rate should totally get that wish.
I think being comparative is not necessarily productive. Those going through, what they are going through, is so personal. That said, I think if one feels a certain way about what they are going through that case should be made to the organizations. I do not know enough about all of the facets of THAT decision process. I know too many kids who lost their battle with both these diseases and the horror is something that no parent should experience. I have made it a practice not to compare any disease states, and I won’t do it here either.
You have made it a practice to defend Make-A-Wish. Both kids should get the wish. The suffering from both is terrible one lasts a short time, the other lasts for decades. Both are very hard on the family. You will see your son struggle. He will have days where he does not care anymore. But diabetes will not care how he feels. It will just keep on being there no matter what.
“You have made it a practice to defend Make-A-Wish……” I am not sure where that came from—-mine is an observation to create discussion—-I am pretty sure I did not come across one way or the other….mine was to create a dialogue.
Thanks for writing
Little Kycie Terry died about a year after getting type 1 diabetes. She lived after having a brain stem hemorrhage but in the end died. It was a complication of t1d. A guy I know from diabetic camp died in his sleep. A complication from t1d. There are many many more stories like this. Now let’s talk about the kids who have seizures. Not just the kind we all know but the ones who have the kind called Todd’s Paralysis. It’s not fun to see your child not be able to talk and seem like they have had a stroke. Then there is the mental suffering that kids get from this. It makes you crazy. Not all kids take it in stride like your son. It’s great as a 5 year old to hear you will only live till 18 from the Doctor. Yes that happened to me. What do you think that does to a kid? Not all kids, or adults have the money to afford the medications for it. Kids see this. They hear their parents talk and cry. But with all that. The pain. The suffering. The fact you know you can die in your sleep, that you will have complications, your right kids who go through all that do not deserve a wish from make a wish. It’s better that these kids grow up knowing no one cares and that this world thinks we did this to ourselves. Because what we need is more cynical people.