Raf's Sister: Lou Gehrig's Disease

[Raf]

Rob and Diana never met.

Several years ago, Rob was a newspaper columnist in South Florida. A good man. A Bronx native. We shared memories of our hometown.

But Rob missed his adoptive home, Des Moines, Iowa, and decided after a too-short stint in South Florida that he and his wife, Rehka, should return. So they did.

They were back in Des Moines for, again, a relatively short time when Rob wrote a powerful and moving column. It was about a visit to the doctor. Many visits, actually. But on this particular visit Rob was told what had been revealed through all the tests of his previous visits. He was diagnosed with a disease called ALS. Lou Gehrig's disease. The illness that cut short a legendary baseball career, a legendary life.

Rob was no fool. He knew he had only a few years to live, at most. Once you're diagnosed, life expectancy is two to five years for the majority of victims. The lucky ones live 10 years. The really lucky ones can live as long as 20 years. In a miniscule few, the symptoms reverse.

Rob prayed to be the exception, but planned to be the rule. He loved his wife and children, gave them the best effort he could. He wrote about his struggles. He couldn't possibly return all the e-mails and phone calls he received encouraging him to fight on, including mine. He gave his time to the people closest to him. And he gave his time to the cause of studying and possibly someday curing ALS.

Rob died in 2006, less than two years after his diagnosis. He was a brave and wonderful man.

I wish he had met Diana.

Diana was also born in New York. She was a personal trainer, a fitness nut. She's always been one of the most blunt, outspoken members of her family.

On Friday, September 28, Diana was diagnosed with ALS. She called her sister, Julie, to break the news.

Julie called their mother, Julia.

Julia called her son, Diana's brother... me.

Please pray.

[Thread title changed by request]

[Shellon]

Absolutely praying with you and your family Raf

Shellon

[doojable]

Raf - your sister and your whole family has my prayers.

[coolchef]

so sorry

praying

[Belle]

(((((Raf)))))

(((((Diana)))))

Raf, praying fervently for you, Diana and the rest of your family.

[act2]

Count me in too, Raf.

[Raf]

Just got off the phone with Diana. She's in relatively good spirits right now. Worried, obviously. Spent the whole weekend in tears, but woke up today determined to get on with her life, whether there's a year or two left or 20. There's really no knowing.

Stephen Hawking has lived with this disease for decades, which is highly unusual, of course. And look what it's done to him.

But we're hopeful. We haven't yet gotten to the second opinion stage, so that's the next step.

It's pretty scary.

[act2]

Thanks for the update, Raf. I know a little of what you are going thru.

God is good. Continuing to pray.

[Suda]

Praying with you, Diana, and your whole family.

Suda

[RainbowsGirl]

I am praying for (((((((You Raf and Your Sister Diana))))))))); and will be continually remembering (((((((((You and Your whole Family))))))) in my prayers!

[Raf]

I'll keep providing updates as I get them. Thanks for all your prayers.

[GeorgeStGeorge]

I'll certainly keep your sister in my prayers, Raf. I've personally known two people with ALS, and it's frightening. I pray that your sister will be an exception.

I imagine that, after an initial flurry of updates, there won't be much to report for long periods of time. Do keep us informed, though. If nothing else, your bumping the thread occasionally will help remind me to pray.

George

[krys]

Of course I am praying too. I think like George so everything he said I say too.

I'm very glad we can pray for and with each other.

[Raf]

Well, they're still checking and testing, crossing t's and dotting i's. But the second opinion evaluation has it at 95% certain that Diana does indeed have ALS.

It's a lot to absorb. We're all out of tears. How do we make these remaining years "quality"?

That, or a miracle, is all we have left.

I refuse to rule out either.

[Tom Strange]

with you brother

[Linda Z]

Sorry I missed this before, Raf. Praying for your sister and your whole family. Miracles still happen.

[Raf]

The full results are in. I's dotted. T's crossed. They are now expressing no doubt whatsoever that my sister does have ALS.

Lord I believe; help thou my unbelief.

[RainbowsGirl]

Dear (((((((((Raf)))))))))!

I will be keeping ((((((Diana)))))))) and You as well as your whole Family in my Prayers!

Stay strong for Her and comfort one another in Love!

[Suda]

Raf,

You and Diana and all your family is in my prayers. And will remain there. I'm glad the intial grieving is over for all of you, so that you can remain united in looking forward to making the best of every day ahead of you, and knowing that miracles are possible.

A Blessing For You

God knows when the hours grow weary and patience is hard to come by.

He feels every pain we experience, He sees every tear that we cry.

So give Him your hurts and your worries: He's waiting each burden to share.

He'll strengthen, uplift and uphold you, and wrap you up warm in His care.

Trusting you'll be feeling better soon!

Cast all your cares upon Him; for He cares for you. I Peter 5:7

Suda

[act2]

Raf and family,

All of you have my sincere, earnest prayers. May the God of love give you the strength and energy to get through this ordeal.

Miracles do happen and are happening!!

[Belle]

Still praying for you, Diana and your whole family, Raf.

[1 john 3:1]

God is still bigger than anything that hits us, so we believe his Word and pray for your sister Raf. :) Happier days are still ahead.

[Raf]

Diana informs us she will be visiting Orlando the weekend after Thanksgiving. I'm making arrangements to head up there with Christine (my wife) at that time so we can spend time with her.

It's odd, honestly, because science and experience tell me this is the last time I will see her looking like herself. This is one of the great challenges of life: appreciating today for what today is, even when you "know" that tomorrow will be so much worse. In all reality, I don't know how to handle it. How will she respond to tears, which are sure to be shed during her visit (other family will be there as well)?

What would you do or say?

[RainbowsGirl]

Dear (((((Raf)))),

They are tears of Love and compassion! I think that she will understand and know how very deep Your Love and Support are for Her. It is better to see it than to wonder about it!

In some ways it lets Her know that it is safe to show her heart about it too!!! Help Her to understand that You will always see her as She truly is; A beautiful Heart, a Beautiful Soul, and a treasure to Your live!!! Let her know that You will always hold Her Gifts to You in Your Heart!

The tears are a release that You All may need! Help her to live in the moments whatever they may bring. Letting Her know She'll never be alone! Knowing that you will always be there and value her life and it's contributions can only strengthen Her and your whole family!

She already knows that Your hearts are breaking for Her; and to Her It may show the depth of all Your Hearts!

Love is very strong, and very powerful and the very most precious gift that we can give one another! Let Her know in definite ways what she has given in her life. Honor Her while she is with You! Cheer Her on all through this! Be who You are and let Her be who She is!

Trust Your judgments and choose what is best for You All!

((((You, Your Family and Diana)))) are continually remembered in our prayers! Don't Count GOD out or Miracles!

Love You All, RainbowsGirl

Edited October 30, 2007 by RainbowsGirl

[GeorgeStGeorge]

It's odd, honestly, because science and experience tell me this is the last time I will see her looking like herself.

What would you do or say?

Tell her you love her.

And don't give up on God.

George