Make a Wish eligibility question

[Mickey'snewestfan]

I'm special educator. Several of my students have been recently granted wishes. The most recent one surprised me, because I wouldn't have necessarily thought that her condition would be considered life threatening. Don't get me wrong, I was delighted. It's a kid and family who have been through a lot, and I know she'll love her trip.

Anyway, it made me think of a couple other kids in my class, one in particular. This kid has been through multiple brain surgeries and other surgeries, and has some ongoing medical issues and disabilities caused by a genetic syndrome, but her condition has a normal life expectancy. I would say that this kid is more impacted, both developmentally and medically that the kid who was recently approved.

Do kids like this sometimes qualify? Is needing multiple brain surgeries such as shunt placements and repairs, considered enough?

I know I need to talk to the family before making a referral, but I don't want to bring it up if there's no chance she'll get approved.

 

[redberyl]

It varies by chapter. My daughters heart condition qualified her for a wish, but I know kids in other chapters with the same diagnosis who were denied. Doesn't matter how much they are impacted developmentally at all, and the medical aspect only counts if it's life threatening. even then, some chapters will say "he had the surgeries, the risk is mostly over" and deny, while others will say "he had the surgeries but there's still a risk of complications or more surgeries" and accept. So it really just depends, which I know isn't very helpful.

 

[LilyWDW]

There are different groups that do "wish" trips now and they each have different qualifications.

 

[Pridemom]

Some chapters allow chronic conditions as well as life threatening conditions. Another option is The Dream Factory. They gave my daughter who has Juvenile Arthritis a "dream."

 

[Mickey'snewestfan]

Thanks everyone!

I looked at the Dream Factory, but it seems they only work in certain states, and ours (MD) isn't one of them. Any other ideas for wish granting organizations that work in MD, and take kids with chronic conditions?

Also, they can't have an extremely long wait list, as she's almost 17.

 

[PatMcDuck]

Our Make a Wish chapter had a list of conditions, but it was not all inclusive, it was just ones that were pretty much automatic. That was my understanding. My daughter had/has an autoimmune disease, Juvenile Dermatomyositis, plus the whole mess began with a nearly fatal blood disease called HLH. (she almost died, we even got the "talk", i.e. "you realize she may not make it thru this" from the doctors.) The JDM was on that list, but I found out later, not on every chapters list (it is rare).

By the time she got the trip, she was still ill but we thought it was under control. She was not really in danger of dying anymore, unless things took an unexpected sudden turn for the worse. She did have major complications after we returned that began a series of major surgeries, unfortunately. She is ok now!

 

[DisneyOma]

If the child has a shunt from brain to spinal column, then it is a life threatening issue. Shunts are serious business!

 

[TheRustyScupper]

. . . kid has been through multiple brain surgeries and other surgeries, and has some ongoing medical issues and disabilities caused by a genetic syndrome, but her condition has a normal life expectancy . . . Do kids like this sometimes qualify?

1) Depends upon the local chapter.
2) In most cases, the MAW-WISH would be denied.
3) There are usually too many "deserving" kids to accept others.

NOTE: I am a Volunteer Coordinator at Give-Kids-The-World (GKTW) and a board member of a local Make-A-Wish (MAW) chapter. From the MAW viewpoint, we would not take a child that was not terminal and would not refer them to GKTW. However, there is an organization called Sunshine Foundation Dream Village in Davenport-Florida that does accept life-long-chronic illnesses without the need to be terminal.

 

[Betty Rohrer]

1) Depends upon the local chapter.
2) In most cases, the MAW-WISH would be denied.
3) There are usually too many "deserving" kids to accept others.

NOTE: I am a Volunteer Coordinator at Give-Kids-The-World (GKTW) and a board member of a local Make-A-Wish (MAW) chapter. From the MAW viewpoint, we would not take a child that was not terminal and would not refer them to GKTW. However, there is an organization called Sunshine Foundation Dream Village in Davenport-Florida that does accept life-long-chronic illnesses without the need to be terminal.

it must depend on chapter as 2 of my grandsons got MAW WISH trips and where not terminal. I know their Doctor got it for them. they stayed at GKTW

 

[Mickey'snewestfan]

1) Depends upon the local chapter.
2) In most cases, the MAW-WISH would be denied.
3) There are usually too many "deserving" kids to accept others.

NOTE: I am a Volunteer Coordinator at Give-Kids-The-World (GKTW) and a board member of a local Make-A-Wish (MAW) chapter. From the MAW viewpoint, we would not take a child that was not terminal and would not refer them to GKTW. However, there is an organization called Sunshine Foundation Dream Village in Davenport-Florida that does accept life-long-chronic illnesses without the need to be terminal.

OP here, I'm confused by this. None of the kids I know who've gotten wishes (3 of my 17 students have had a wish granted in the past 24 months) are "terminal". They have conditions that may be life threatening in that they increase the risk of death, especially if not treated, but they are all receiving treatment and are expected to survive.

The MAW website for our area is pretty clear that kids don't need to be terminal. Does that vary from place to place?

 

[redberyl]

My chapter for sure doesn't require terminal illness, they specify "life threatening"

 

[SirDuff]

Our MAW chapter also doesn't require that children have a terminal diagnosis to receive a wish. Many of reports on here are of children without a terminal diagnosis.

Assuming that Rusty is part of the Northern and Central Florida chapter, his statement contradicts their website:

Who is Eligible?
A child with a life-threatening medical condition who has reached the age of 2½ and is younger than 18 at the time of referral is potentially eligible for a wish.

http://cnfl.wish.org/refer-a-child

 

[Allison]

1) Depends upon the local chapter.
2) In most cases, the MAW-WISH would be denied.
3) There are usually too many "deserving" kids to accept others.

NOTE: I am a Volunteer Coordinator at Give-Kids-The-World (GKTW) and a board member of a local Make-A-Wish (MAW) chapter. From the MAW viewpoint, we would not take a child that was not terminal and would not refer them to GKTW. However, there is an organization called Sunshine Foundation Dream Village in Davenport-Florida that does accept life-long-chronic illnesses without the need to be terminal.

In most cases in what area?

 

[SueM in MN]

Our MAW chapter also doesn't require that children have a terminal diagnosis to receive a wish. Many of reports on here are of children without a terminal diagnosis.

Assuming that Rusty is part of the Northern and Central Florida chapter, his statement contradicts their website:

Who is Eligible?
A child with a life-threatening medical condition who has reached the age of 2½ and is younger than 18 at the time of referral is potentially eligible for a wish.

http://cnfl.wish.org/refer-a-child

That is also what it says on the national Make a Wish website. Everything on their website uses the term "life-threatening medical condition." This is from the national website:
To be eligible, children must meet these criteria at the time of referral:

• Diagnosed with a life-threatening condition, i.e., a progressive, degenerative or malignant condition that is placing the child's life in jeopardy
• Older than 2½ years and younger than 18
• Has not received a wish from another wish-granting organization

http://wish.org/refer-a-child#sm.0000y950i6u70eynuzy28wr82e80t

In their FAQs, they actually adress whether a child needs to be terminal or not:
Does a child's condition have to be terminal to qualify for a wish?
No. Many of the children who qualify for a wish go on to lead healthy lives. We grant the wishes of medically eligible children (i.e., those diagnosed with life-threatening medical conditions — a progressive, degenerative or malignant condition that has placed the child's life in jeopardy).
http://wish.org/content/faq#Does-a-child's-condition-have-to-be-terminal-to-qualify-for-a-wish

When I have contacted MAW, they have said they rely a lot on the certification from the MD, who actually fills out the information about the condition the child has.

When I first became a nurse, MAW was for terminal conditions, but that is was because survival rates for many of the conditions that can cause death in children were very low.
I couldn't find figures to compare the 1980s to now, but in the 1960s, less than 30-40% of children diagnosed with cancer survived for 5 years after diagnosis. By 2015, more than 80% of those children survived at least 5 years. Too many still die, but many are surviving into adulthood.
Children with Cystic Fibrosis, another life threatening condition, had almost no chance of living past preschool age in the 1960s. By the 1980s, life expectancy was to an average of 14 years and now average is 37.5 years.
All these survival rate changes are due to advances in treatment. They are still extremely serious and deadly diseases and will likely shorten life, but they are no longer kind of 'immediately terminal' like they used to be.

 

[Minnie17]

I'm special educator. Several of my students have been recently granted wishes. The most recent one surprised me, because I wouldn't have necessarily thought that her condition would be considered life threatening. Don't get me wrong, I was delighted. It's a kid and family who have been through a lot, and I know she'll love her trip.

Anyway, it made me think of a couple other kids in my class, one in particular. This kid has been through multiple brain surgeries and other surgeries, and has some ongoing medical issues and disabilities caused by a genetic syndrome, but her condition has a normal life expectancy. I would say that this kid is more impacted, both developmentally and medically that the kid who was recently approved.

Do kids like this sometimes qualify? Is needing multiple brain surgeries such as shunt placements and repairs, considered enough?

I know I need to talk to the family before making a referral, but I don't want to bring it up if there's no chance she'll get approved.

As a mother who has signed over 20 surgery consents, the risk of death, serious injury, and paralysis is on all surgery consents involving the brain and/or spinal cord (likely others as well those two are just unfortunately my expertise). Much of MAW's decision is based on what the physician(s) input reveals. I personally think nominating the child is a wonderful idea. However, it can be very hard for the parents to accept and realize their child does have a life threatening condition. The benefits of the wish are unmeasurable. Best of luck!

 

[SirDuff]

That is also what it says on the national Make a Wish website. Everything on their website uses the term "life-threatening medical condition." This is from the national website:
To be eligible, children must meet these criteria at the time of referral:

• Diagnosed with a life-threatening condition, i.e., a progressive, degenerative or malignant condition that is placing the child's life in jeopardy
• Older than 2½ years and younger than 18
• Has not received a wish from another wish-granting organization

http://wish.org/refer-a-child#sm.0000y950i6u70eynuzy28wr82e80t

In their FAQs, they actually adress whether a child needs to be terminal or not:
Does a child's condition have to be terminal to qualify for a wish?
No. Many of the children who qualify for a wish go on to lead healthy lives. We grant the wishes of medically eligible children (i.e., those diagnosed with life-threatening medical conditions — a progressive, degenerative or malignant condition that has placed the child's life in jeopardy).
http://wish.org/content/faq#Does-a-child's-condition-have-to-be-terminal-to-qualify-for-a-wish

Children with Cystic Fibrosis, another life threatening condition, had almost no chance of living past preschool age in the 1960s. By the 1980s, life expectancy was to an average of 14 years and now average is 37.5 years.

Interesting that Rusty's chapter directly contradicts national rules.

What you say definitely makes sense and was my understanding for the change as well (a great reason for such a change!).

BTW - median life expectancy for CF has cracked 50 years (I did my PHD studying CF and crossing the 50 year mark was huge).

 

[SueM in MN]

Interesting that Rusty's chapter directly contradicts national rules.

What you say definitely makes sense and was my understanding for the change as well (a great reason for such a change!).

BTW - median life expectancy for CF has cracked 50 years (I did my PHD studying CF and crossing the 50 year mark was huge).

Thanks. I knew it was more than 37.5, but that was the last I had heard and the age I found reference for.
That said, we have had people with CF in the hospital I work at who were close to 50.
My younger daughter had a classmate who died of CF at about 14, so sad.

 

[SirDuff]

Thanks. I knew it was more than 37.5, but that was the last I had heard and the age I found reference for.
That said, we have had people with CF in the hospital I work at who were close to 50.
My younger daughter had a classmate who died of CF at about 14, so sad.

Sorry, I didn't mean to be a know-it-all Just happens to be one of those things that I know.

Actually, I realised that I misspoke (or, rather, gave the wrong impression). The median survival age in Canada (where I'm from) reached 50 years but it is 41 years in the US. Still amazing compared to a short while ago, but the US is almost 10 years less than Canada. Some interesting articles about why, but some of the reasons might veer into political area (though some of purely medical - we started the high fat/high calorie diet about a decade before the US did, for example).

And, yes, a sad disease with far too many young deaths (even now).