[baileysdad]

That's what the parents of about 200 kids around the world heard when their kids were diagnosed with H-ABC, a very rare, terminal brain disorder. There is no treatment, no cure. They are diagnosed about 2 to 4 years old and live to their early teens. The Foundation to Fight H-ABC was formed to raise funds for research. Go to H-ABC.org to learn more.

To raise research dollars in The Villages we are hosting:
The Barry Manilow tribute show
Savannah Center
March 19, 2022
Shows at 5PM and 8PM
All tickets are $40
Get tickets at thevillagesentertainment.com

Many of you have met Elouise at our other H-ABC fundraising events - she will be there with her beautiful smile to thank you for coming.

[DAVES]

Originally Posted by baileysdad

That's what the parents of about 200 kids around the world heard when their kids were diagnosed with H-ABC, a very rare, terminal brain disorder. There is no treatment, no cure. They are diagnosed about 2 to 4 years old and live to their early teens. The Foundation to Fight H-ABC was formed to raise funds for research. Go to H-ABC.org to learn more.

To raise research dollars in The Villages we are hosting:
The Barry Manilow tribute show
Savannah Center
March 19, 2022
Shows at 5PM and 8PM
All tickets are $40
Get tickets at thevillagesentertainment.com

Many of you have met Elouise at our other H-ABC fundraising events - she will be there with her beautiful smile to thank you for coming.

I don't know what I would do. Perhaps, the right thing is to allow her to forget pending death and enjoy current LIFE. Is taking her to fundraisers, FAIR, RIGHT? I do not have answers only questions that few DARE to ask.

[fdpaq0580]

Originally Posted by DAVES

I don't know what I would do. Perhaps, the right thing is to allow her to forget pending death and enjoy current LIFE. Is taking her to fundraisers, FAIR, RIGHT? I do not have answers only questions that few DARE to ask.

I, also have no idea what I would do. Part of me agrees with you about letting her focus on life and enjoy it. But there is also the likelihood she may get great pleasure in doing what she can to bring awareness to something very few of us may have even heard of. There is joy in helping others, and in her own way she is doing what she can to help battle H-ABC. Good luck in finding a cure.
🙏

[Northwoods]

Originally Posted by DAVES

I don't know what I would do. Perhaps, the right thing is to allow her to forget pending death and enjoy current LIFE. Is taking her to fundraisers, FAIR, RIGHT? I do not have answers only questions that few DARE to ask.

I doubt someone with a death sentence can forget about what's to come. And I certainly don't know what is fair. Perhaps participating in fundraisers brings hope. Maybe they believe with research, there can be a cure. It at least gives them something positive to focus on.
There but for the grace of god....

[baileysdad]

If you meet her, she has the biggest smile on her face! She knows EVERYTHING that is going on. My wife and I have been involved with this Foundation for 6 years. The research that has been done in that short amount of time has been unbelievable. It's baby steps. It's only because of people like YOU that attend golf tournaments and shows, that give these kids HOPE. If you are going..THANK YOU. If you are not ...PLEASE reconsider. It could happen to you!

[davem4616]

What would I do if I found out my grandchild had a tough diagnosis?

obviously first I'd want make sure that there was a second opinion, from one of the more advanced medical centers...that handle the difficult cases...if my child and their spouse needed money or support for that to happen, I'd step and offer help

Then I'd have a conversation with my child and their spouse to find out how I might be able to help them cope with what was ahead for them

it certainly pulls at the heart when you hear that a young child won't have the chance to grow up and have a normal life...because there is nothing the medical community can do

After I figured out how my child and their spouse wanted me to support them, and my grandchild I'd take action...

It's heartbreaking whenever a child is excluded from so much, but it will be hard on the parents too....so I'd be more inclined to try to give them a break periodically...let them get away. Being a constant caregiver is draining...and can easily end a marriage that otherwise was sound

I get the whole death sentence thing...32 years ago I was told that I had 4 months, maybe 4 years to live due to an aggressive and unpredictable form of cancer...obviously I beat the odds...but it was a tough ride for awhile, mentally...gave me a different outlook on life...I don't suffer fools now

yeah you can do 'the walks' to raise money, but, there's not a lot of research going on for the obscure diseases, because the return isn't there for the big companies....so you help raise money, and hope you get lucky, and it makes you feel like you're actually doing something (and I'm not knocking the OP in any way for doing what he's doing)


In the whole scope of things, it's a very similar challenge to hearing that your spouse has Alzheimer's, at what you considered to be a young age, when you weren't done enjoying life together...suddenly you no longer have the partner that you had, suddenly you're the 24x7 caregiver...and there's nothing that can be done about "the long goodbye"

yeah there's drug trials and you can walk to raise money...and you fit all that in with being the caregiver

sometimes life just shows up...and you have to move forward, one step at a time