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Old 03-12-2013, 08:13 AM   #1
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Question WWDY if your child had a life shortening genetic disorder?

I had an experience yesterday that got me thinking and wondering about this.

If your child was diagnosed with a recessive genetic disorder with a life expectancy of 20-30 would you do extensive medical treatments to treat their symptoms along the way, ie. bone marrow transplants, chemo therapy etc.?
Would you participate in covered occupational therapy, physical therapy and speech therapy?
Would you save for their education?

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Old 03-12-2013, 08:21 AM   #2
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Re: WWDY if your child had a life shortening genetic disorder?

It would depend. Once I got past the whole grieving process, and there is a grieving process with something like this, I'd have to look at the evidence - does those treatments have a good track record of helping lengthen their life without unduly reducing the quality of life? Sometimes the treatments are essentially busy work to make the person or their family feel like they're doing things to save them, but are ultimately stealing what years they have to try to give them more. If there was a good chance it could be cured or thrown into remission for several years, then yes of course.

As far as saving for education, I probably would. Not in a registered plan where the money must be used for education, but in a different form where the money could go to something else that might enrich their life. If they end up using it for education, great, but they may need something else instead.
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Old 03-12-2013, 08:21 AM   #3
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Re: WWDY if your child had a life shortening genetic disorder?

Of course I would do everything I could medically to make their life better and healthier. Twenty to thirty years is a long time and I would want them to have everything they need regardless of how long they live. And I would do these things for a child who will make it two years,every life is precious and there are no guarantees on how long anyone will live.
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Old 03-12-2013, 08:22 AM   #4
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Re: WWDY if your child had a life shortening genetic disorder?

Whatever it takes for less suffering and more comfortable life for the child to enjoy the life to the fullest. If that means getting a second or third job to support the child then by all means.
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Old 03-12-2013, 08:23 AM   #5
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Re: WWDY if your child had a life shortening genetic disorder?

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It would depend. Once I got past the whole grieving process, and there is a grieving process with something like this, I'd have to look at the evidence - does those treatments have a good track record of helping lengthen their life without unduly reducing the quality of life? Sometimes the treatments are essentially busy work to make the person or their family feel like they're doing things to save them, but are ultimately stealing what years they have to try to give them more. If there was a good chance it could be cured or thrown into remission for several years, then yes of course.

As far as saving for education, I probably would. Not in a registered plan where the money must be used for education, but in a different form where the money could go to something else that might enrich their life. If they end up using it for education, great, but they may need something else instead.
I agree.
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Old 03-12-2013, 08:25 AM   #6
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Re: WWDY if your child had a life shortening genetic disorder?

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Originally Posted by Computermama View Post
It would depend. Once I got past the whole grieving process, and there is a grieving process with something like this, I'd have to look at the evidence - does those treatments have a good track record of helping lengthen their life without unduly reducing the quality of life? Sometimes the treatments are essentially busy work to make the person or their family feel like they're doing things to save them, but are ultimately stealing what years they have to try to give them more. If there was a good chance it could be cured or thrown into remission for several years, then yes of course.

As far as saving for education, I probably would. Not in a registered plan where the money must be used for education, but in a different form where the money could go to something else that might enrich their life. If they end up using it for education, great, but they may need something else instead.
Exactly. Especially to the bolded.
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Old 03-12-2013, 08:26 AM   #7
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Re: WWDY if your child had a life shortening genetic disorder?

I would pursue treatments that would maintain comfort and quality of life. So probably not chemo, unless there was a fair chance that it could cure the disease.
I think I would still plan on education, wedding expenses, etc, unless the child was too disabled for those things to be practical. Maybe put that money towards travel and experiences instead--making family memories with the time we have.

Hope everything's ok, OP.
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Old 03-12-2013, 08:33 AM   #8
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Re: WWDY if your child had a life shortening genetic disorder?

Yes, 30 years is just an estimate, and 30 years in terms of medical advancement could be VERY significant in treatment for a genetic condition. The child could live much longer or shorter depending on the treatments and response to treatment, but I would plan long term for them just like I would any other child. I know several children who were given a 10 yr estimate, and went on to live 20 years beyond that and are still alive today because of medical advancements.
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Old 03-12-2013, 08:39 AM   #9
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Like a PP, I would heavily research all treatment options and decide if the side effects were worth the intended effects. IMO, many times they are not. Also once the child was "old enough" I would let them help make those decisions, it is their life after all.

We would definitely be putting money aside for him/her but it wouldn't strictly be for education.
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Old 03-12-2013, 08:39 AM   #10
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Yes. Things change quickly in the medical field. I could never live my life "planning" for my child to die.
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