Wish trip organization for Type 1 Diabetes?

[Nanu57v]

I hadn't heard of one, but I thought you all would know best. The little boy I babysit was supposed to go to Disney World and on a 3 night cruise with his grandparents last week. Two days before he was supposed to leave, he was found to be diabetic and was rushed to a hospital 2 hours away where he stayed several days. He's now in a world of finger pricks and insulin shots and is only 4. So, obviously didn't go. I mentioned to his parents about just taking him themselves sometime soon (the kid still thinks its almost time for his trip), but its a money issue.

So, is there a wish trip type organization for this that would help cover a trip for the parents to take him?

 

[Cheshire Figment]

I really don't think so.

MAW (and similar) is for children with terminal, life threatening, or other dehabilitating medical problems. Diabetes, when properly cared for, is none of these.

And if they had insurance this obviously was not a known pre-existing condition and would qualify for full coverage on just about any trip insurance.

 

[Nanu57v]

I really don't think so.

MAW (and similar) is for children with terminal, life threatening, or other dehabilitating medical problems. Diabetes, when properly cared for, is none of these.

And if they had insurance this obviously was not a known pre-existing condition and would qualify for full coverage on just about any trip insurance.

Still pretty scary stuff. His numbers are all over the place...but yes, it could be worse. Was off school for 2 weeks, and still isn't back to me watching him yet. Grandparents had insurance, and got money back/points put in holding, but was looking for an opportunity for parents to take him.

 

[Nanu57v]

Did some research on my own...didn't find anything...but found this article helpful if anyone stumbles upon my post.

http://www.dlife.com/dLife/do/ShowC...ling_with_diabetes/disney_with_diabetes.page3

 

[SueM in MN]

The answer to whether or not the child would qualify for a Make A Wish trip would be 'it depends'.
MAW says they grant wishes to "children with life-threatening medical conditions" without really defining what "life-threatening medical conditions" means other than "i.e., a progressive, degenerative or malignant condition that has placed the child’s life in jeopardy."
I believe they are using this definition of malignant:
"very dangerous or harmful in influence or effect."

MAW website link to eligibility information.

"Who is eligible?

A child with a life-threatening medical condition who has reached the age of 2 1/2 and is under the age of 18 at the time of referral, is potentially eligible for a wish.

After a child is referred to the Make-A-Wish Foundation®, the Foundation will contact the child's treating physician to determine whether the child is medically eligible for a wish, based on the medical criteria established by the Make-A-Wish Foundation of America. In addition, a child cannot have received a wish from another wish-granting organization."

So, the child's physician has a big part in determining whether or not a child qualifies for MAW. I do know that some children with diabetes have been granted wishes in the past. With treatment, diabetes can be a fairly uncomplicated chronic illness, but even with good treatment, it can also be deadly. One low blood sugar can be deadly if not recognized right away. For some children, good control can be hard to achieve at first and they may qualify for MAW for that reason.

You may want to look into an organization called Dream Factory (LINK CORRECTED after update). Try doing an internet search for "Dream Factory" + whatever state they are in to see if you can find a local chapter. Their criteria includes that the child is between 3 and 18 years old and has been diagnosed with a critical or chronic illness.

 

[Nanu57v]

The answer to whether or not the child would qualify for a Make A Wish trip would be 'it depends'.
MAW says they grant wishes to "children with life-threatening medical conditions" without really defining what "life-threatening medical conditions" means other than "i.e., a progressive, degenerative or malignant condition that has placed the child’s life in jeopardy."
I believe they are using this definition of malignant:
"very dangerous or harmful in influence or effect."

MAW website link to eligibility information.

"Who is eligible?

A child with a life-threatening medical condition who has reached the age of 2 1/2 and is under the age of 18 at the time of referral, is potentially eligible for a wish.

After a child is referred to the Make-A-Wish Foundation®, the Foundation will contact the child's treating physician to determine whether the child is medically eligible for a wish, based on the medical criteria established by the Make-A-Wish Foundation of America. In addition, a child cannot have received a wish from another wish-granting organization."

So, the child's physician has a big part in determining whether or not a child qualifies for MAW. I do know that some children with diabetes have been granted wishes in the past. With treatment, diabetes can be a fairly uncomplicated chronic illness, but even with good treatment, it can also be deadly. One low blood sugar can be deadly if not recognized right away. For some children, good control can be hard to achieve at first and they may qualify for MAW for that reason.

You may want to look into an organization called Dream Factory (the link says the organization is offline right now). Try doing an internet search for "Dream Factory" + whatever state they are in to see if you can find a local chapter. Their criteria includes that the child is between 3 and 18 years old and has been diagnosed with a critical or chronic illness.

Thanks so much! I gave him a shot for the first time this week. His mom made me practice on her first, and then when I looked like I was going to be sick she gave me one to show that it didn't hurt (not with insulin, obviously...she knew I didn't have an issue with needles, just didn't want to hurt anyone). I'll look into those organizations.

 

[Nanu57v]

Just wanted to update, the dream factory looks perfect, except they don't have chapters in our state. So hopefully someone else reading who needs it will have a local chapter. The working link for them is http://www.dreamfactoryinc.org/

 

[SueM in MN]

Just wanted to update, the dream factory looks perfect, except they don't have chapters in our state. So hopefully someone else reading who needs it will have a local chapter. The working link for them is http://www.dreamfactoryinc.org/

Sorry to hear they don't have a unit in your state.
Thanks for the new link though.

 

[momma_mouse]

Sorry to hear they don't have a unit in your state.

Thanks for the new link though.

I just came here to tell you abour Dream Factory as well. My DS, 3, was just diagnosed with diabetes as well. It's only been about 3 weeks and he's already been granted a dream. The lady is coming to the house on Thursday to talk to him. I've asked him if he could choose one thing he wanted to do what would it be. He said "I want to see Mickey Mouse and Goofy. Goofy is my favorite and he's going to give me a kiss." (Since then he has added Handy Manny, Little Einsteins, Nemo and Woody to that list.) So, it looks like we will be going to Disney after all.

I'm so excited because we had been planning on taking him fall 2010 or spring 2011 and had to cross that idea out of our minds after his diagnosis. His medical bills are high plus the cost of his insulin and supplies every month. His doctor is also 2 1/2 hours away and right now we're having to go every couple of weeks. I had to get a job (I've stayed home since I was pregnant with my oldest almost 7 years ago.) which I hadn't planned on doing until all of my kids were in school just to help with all his medical expenses. Now he's still going to get that trip. I'm beyond thrilled for him and can't wait to see his face when he meets Mickey Mouse! My little guy is such a trooper he deserves whatever he wants! I don't know too many 3 year olds who will roll up their sleeve (or pants leg) when it's time for a shot. He's awesome and I want him to know it!

About the kittke guy you know whose numbers are all over the place...do you know what kind of insullin he is on and how often? We were having the same problem and finally got it straightened out. We had to switch to a different doctor who treats diabetes differently.

 

[Nanu57v]

I just came here to tell you abour Dream Factory as well. My DS, 3, was just diagnosed with diabetes as well. It's only been about 3 weeks and he's already been granted a dream. The lady is coming to the house on Thursday to talk to him. I've asked him if he could choose one thing he wanted to do what would it be. He said "I want to see Mickey Mouse and Goofy. Goofy is my favorite and he's going to give me a kiss." (Since then he has added Handy Manny, Little Einsteins, Nemo and Woody to that list.) So, it looks like we will be going to Disney after all.

I'm so excited because we had been planning on taking him fall 2010 or spring 2011 and had to cross that idea out of our minds after his diagnosis. His medical bills are high plus the cost of his insulin and supplies every month. His doctor is also 2 1/2 hours away and right now we're having to go every couple of weeks. I had to get a job (I've stayed home since I was pregnant with my oldest almost 7 years ago.) which I hadn't planned on doing until all of my kids were in school just to help with all his medical expenses. Now he's still going to get that trip. I'm beyond thrilled for him and can't wait to see his face when he meets Mickey Mouse! My little guy is such a trooper he deserves whatever he wants! I don't know too many 3 year olds who will roll up their sleeve (or pants leg) when it's time for a shot. He's awesome and I want him to know it!

About the kittke guy you know whose numbers are all over the place...do you know what kind of insullin he is on and how often? We were having the same problem and finally got it straightened out. We had to switch to a different doctor who treats diabetes differently.

He likes to get his shots in the butt. He gets a long term insulin in the AM, and shots after breakfast, lunch, PM snack, dinner and evening snack (I think). The reason his numbers were all over we think was because the first dr. didn't explain to them to adjust for activity, so he was getting a bunch of 50's. Hopefully they got that figured out now.

For the cost of supplies, the strips alone are 400 a month right now, but they should be able to pick up free PA health care in the next month or so which will help with some copays and supplies.

Oh, and I found a DREAM FACTORY in PA on the GKTW page! I hope its valid!

 

[daneenm]

He likes to get his shots in the butt. He gets a long term insulin in the AM, and shots after breakfast, lunch, PM snack, dinner and evening snack (I think). The reason his numbers were all over we think was because the first dr. didn't explain to them to adjust for activity, so he was getting a bunch of 50's. Hopefully they got that figured out now.

The reason his numbers are over the place is...HE IS 4, he is newly diagnosed, as hard as we try to think like a pancreas we can never be as good as the body itself, he has Type 1 Diabetes. Not to be glib, but we have been at this a lot of years now (DS was dx at 20 months and is now almost 9 - past his 7 year mark) and if there is one main lesson I have learned is that as hard as you try, you WILL have numbers that you cannot explain or did not expect. This is especially true in smaller children ( and teens, as I understand it - those hormones!).

You are doing a really great thing for this family by agreeing to learn his routine and needs. I know so many families who do not have this and it is so incredibly hard. I'm not sure how people do it without support!

Pretty soon you will all be in a routine and daily management will be easier. Not perfect, but easier.

 

[maroo]

I just want to add a little bit to these answers...

Sue is totally correct about how MAW works for these wishes.

We have had one child that is the DD of a DISer and her case of diabetes was serious enough to qualify her for a Dream Factory wish in the "life threatening" category. Make a Wish only provides wishes for life threatening cases. Dream Factory grants wishes for both.

The category only matters because it depends on how the wish is carried out. If the condition is considered life threatening, then the family is invited to stay at Give Kids the World.

If the child qualifies for a Dream Factory wish, but is not considered "life threatening" then they get the wish to go to Disney, but they normally stay offsite and get the tickets, etc. It is just a different type of trip. If that makes sense.

I just want to clarify - especially if we have anyone "lurking" on the Wish Trippers thread and may expect to stay at GKTW and not necessarily be medically qualified for that stay.

I have a dear friend with a son that is considered to have an immediate life threatening form of Diabetes and he is being granted a wish from Make a Wish. So it really totally depends on the individual case for the child.


My friend Lauren qualified for a wish in 2008 with a diagnosis of "cerebral palsy" - this was confusing to many people since CP is not normally a life threatening condition, including people on the DIS (inciting some mean comments to me and her family ) - but they were not aware that her condition, although named cerebral palsy for lack of a better term - is indeed a progressive unknown illness that continues to progress despite medical intervention. Her condition continues to seriously decline. Based on the diagnosis alone, it is very difficult to tell what would be considered life threatening.

Like Sue said - it totally depends!

 

[Eeyores Butterfly]

MAW does not decide what is considered life threatening or not. The doctor must sign off on it. So theoretically, a child with diabetes could qualify if the doctor believes their diabetes is life threatening. Again, it is all up to the doctor to fill out the form and make the decision.

Dream Factory does do chronic illnesses as well as life threatning ones. They are the only ones who grant wishes to children with chronic illnesses. All other organizations grant wishes to children with life threatening illnesses.

ETA: Get the form from MAW and give it to the doctor. If the doctor deems it life threatening then MAW will grant the wish. The worst he can do is say no.

ETAx2: Children with Diabetes has the Friends for Life conference every year in Orlando. Many people here recommend it. Why not look into that as another option?

 

[SueM in MN]

My friend Lauren qualified for a wish in 2008 with a diagnosis of "cerebral palsy" - this was confusing to many people since CP is not normally a life threatening condition, including people on the DIS (inciting some mean comments to me and her family ) - but they were not aware that her condition, although named cerebral palsy for lack of a better term - is indeed a progressive unknown illness that continues to progress despite medical intervention. Her condition continues to seriously decline. Based on the diagnosis alone, it is very difficult to tell what would be considered life threatening.

Like Sue said - it totally depends!

Just a bit of additional clarification about Cerebral Palsy.
Cerebral Palsy is, by definition, a non-progressive condition, although the symptoms may change. For example, my youngest DD has cerebral palsy. When she was younger, she could walk, but as she got older and taller, her center of gravity changed and she is no longer able to walk.
There are also people who are first diagnosed with cerebral palsy, but as time goes on, they appear to not have cerebral palsy. Even though it's not the 'correct' diagnosis, there may not be one that fits better, so it will stay until something more definite comes along. That sounds like what is possibly the situation with Lauren.
My DD is generally healthy and, along with her CP, she also has scoliosis which is fairly stable. Scoliosis (curvature of the spine) is fairly common in people with CP because the muscles may pull more strongly on one side of the spine than the other. This causes the spine to curve as parts of the spine are pulled by the tight muscles.
I know a boy with cerebral palsy in her dance class who is not so lucky. He has scoliosis which has progressed to the point that his lungs are compressed. He usually has pneumonia several times a year.
His CP causes other problems that are life threatening. My DD's CP does not.

My DD also has epilepsy and has several seizures a month. Her seizures are more of an inconvenience and energy zapper at this point. But I do know people whose seizures are a medical emergency since they stop breathing. Their epilepsy would be life threatening, my DD's would not be considered life threatening.

MAW does not decide what is considered life threatening or not. The doctor must sign off on it. So theoretically, a child with diabetes could qualify if the doctor believes their diabetes is life threatening. Again, it is all up to the doctor to fill out the form and make the decision.

Dream Factory does do chronic illnesses as well as life threatning ones. They are the only ones who grant wishes to children with chronic illnesses. All other organizations grant wishes to children with life threatening illnesses.

ETA: Get the form from MAW and give it to the doctor. If the doctor deems it life threatening then MAW will grant the wish. The worst he can do is say no.

ETAx2: Children with Diabetes has the Friends for Life conference every year in Orlando. Many people here recommend it. Why not look into that as another option?

Clarification: According to the MAW website and what I have read in the past, MAW also has medical criteria that need to be met along with the doctor certifying that the child has a life threatening illness. I do think they would work with the doctor if the doctor feels the illness is life threatening. But, they also have medical criteria, so it's not only the doctor that decides.

 

[Belle4mygrl]

I know nothing about MAW foundation but for them to not consider Type 1 diabetes as life threatening they are seriously in need of training.

Yes, I understand the doc has to sign off on it. My youngest has Type 1. i would never asked my doc to do that though. This is my opinion and I am not condemning those who do it but I would rather a child who is terminally ill have it.

 

[Eeyores Butterfly]

Basically, what I was told in my Wish Granter training was that they give a form for the doctor to fill out, that includes their medical criteria. I wish I had my Wish Granter's book, but it is still in Jeff City. Going from memory (I had the training in July), the doctor has to certify that it is a life threatening illness. There's maybe one or two other things, but that is the crux of it. It is all there on the form for the doctor to fill out. If the doctor fills out that the patient meets the requirements, then MAW grants the wish. What they told us in our training, is that it is completely up to the doctor, we go by what they tell us. We do not decide which diseases do or do not qualify.

One thing they tell us is to make sure if a child is denied, we do not bad talk the doctors.

 

[SueM in MN]

Basically, what I was told in my Wish Granter training was that they give a form for the doctor to fill out, that includes their medical criteria. I wish I had my Wish Granter's book, but it is still in Jeff City. Going from memory (I had the training in July), the doctor has to certify that it is a life threatening illness. There's maybe one or two other things, but that is the crux of it. It is all there on the form for the doctor to fill out. If the doctor fills out that the patient meets the requirements, then MAW grants the wish. What they told us in our training, is that it is completely up to the doctor, we go by what they tell us. We do not decide which diseases do or do not qualify.

One thing they tell us is to make sure if a child is denied, we do not bad talk the doctors.

We are saying the same thing.
Doctors fill out forms all the time where they certify things like what level of care a patient needs. MAW would be the same thing - MAW gives the criteria and the doctor either agrees that the patient meets that criteria or does not meet that criteria.

My point was that if a doctor writes "my patient has a life-threatening illness", but the patient does not meet the MAW criteria, MAW would not grant the wish.
The se thing happens with handicapped parking permits. The doctor signs the form and checks off which of the listed criteria the patient's condition meets. The criteria is set, not totally up to the doctor just writing "needs handicapped parking."

 

[Nanu57v]

The reason his numbers are over the place is...HE IS 4, he is newly diagnosed, as hard as we try to think like a pancreas we can never be as good as the body itself, he has Type 1 Diabetes. Not to be glib, but we have been at this a lot of years now (DS was dx at 20 months and is now almost 9 - past his 7 year mark) and if there is one main lesson I have learned is that as hard as you try, you WILL have numbers that you cannot explain or did not expect. This is especially true in smaller children ( and teens, as I understand it - those hormones!).

You are doing a really great thing for this family by agreeing to learn his routine and needs. I know so many families who do not have this and it is so incredibly hard. I'm not sure how people do it without support!

Pretty soon you will all be in a routine and daily management will be easier. Not perfect, but easier.

Thanks! I gave him a second shot yesterday...and tomorrow I'll be on my own for the first day. Both times I gave him shots he said I did such a good job he gave me a sticker. Is there anything else you'd recommend me doing to support the parents?

 

[daneenm]

Thanks! I gave him a second shot yesterday...and tomorrow I'll be on my own for the first day. Both times I gave him shots he said I did such a good job he gave me a sticker. Is there anything else you'd recommend me doing to support the parents?

Well, in this Mom's opinion, you are doing it. Learn his routine, first and foremost. Learning more about T1D in general is helpful (and would be great to do in addition), but each person is different and the general doesn't do it for you in the day-to-day management of the child you are working with. That takes learning about him. His needs will change ALL THE TIME. If he is sick, excited, played a soccer game, is taking a test...you name it and it will probably effect his BG in one way or another. The more you work with him the more patterns you will be able to see.

In our family, once we got over the shock of it all, we have worked very hard to make DS's life as unaffected by T1D as we can. We do not let it rule our lives or his. He is a normal 8 year old boy with 8 year old needs. We focus on keeping him healthy and just letting him be a child.

 

[Nanu57v]

Well, in this Mom's opinion, you are doing it. Learn his routine, first and foremost. Learning more about T1D in general is helpful (and would be great to do in addition), but each person is different and the general doesn't do it for you in the day-to-day management of the child you are working with. That takes learning about him. His needs will change ALL THE TIME. If he is sick, excited, played a soccer game, is taking a test...you name it and it will probably effect his BG in one way or another. The more you work with him the more patterns you will be able to see.

In our family, once we got over the shock of it all, we have worked very hard to make DS's life as unaffected by T1D as we can. We do not let it rule our lives or his. He is a normal 8 year old boy with 8 year old needs. We focus on keeping him healthy and just letting him be a child.

On my own today...counted carbs and all. I got 2 stickers for how well I did the lunchtime shot. I was so nervous about hurting him that I couldn't eat with the kids, but everything worked out. Let me know if you can think of anything else I can do/should do to support the family...thanks!