Dedication to Lisa

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Re: Dedication to Lisa
« Reply #30 on: September 08, 2012, 07:47:38 PM »
I'm new to the group today.  How wonderful to read about Lisa. My many thanks to her posthumously for this wonderful site, and her great beauty. May God keep her in His Love and Care for all eternity!

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Offline Pratik

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Re: Dedication to Lisa
« Reply #31 on: January 30, 2013, 07:08:51 PM »
Lisa had hepatitis C, which destroyed her liver. She died after a procedure was done to prepare her for a liver transplant. She also had congestive heart failure and advanced osteoporosis. Her iron load was also high due to her reaction to desferal, which made it difficult to chelate, as that was the only available chelator at that time in the US. It was very difficult to watch her health deteriorate during her last year. My only solace is that Lisa told me that she had done everything in life she wanted to do and she was ready to die and go meet her daddy, who was also a thal major.
Sorry for posting regarding this, but my heart broke reading this. I also wanted to ask several questions whether or why didn't Lisa tried traditional treatments?

1. For liver, she could have tried nigella or milk thistle? Or were she unaware of it at that time.
2. Advanced osteoporosis? How would you define it? I also had very bad shaking osteoporosis in 2009 as you know, Andy, felt like cutting my legs in those days. There's lot of improvement today, stopped my osteoporosis meds after I started Osteocare (cal+mag source for those who are unknown). Can Osteoporosis kill people?

Lisa's dad were thal major? Oh, never knew that! Hats off to the Cammilleri family. There isn't a single day I don't think about Lisa and her legacy that she bestowed upon us.

-P.
Every child is special.

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Offline Andy Battaglia

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Re: Dedication to Lisa
« Reply #32 on: January 31, 2013, 01:19:34 AM »
Because of a bogus experiment in a test tube that claimed milk thistle inhibited the absorption of other meds, Lisa was afraid to take milk thistle, even though her mother and I both tried to get her to take it. I did not know about Nigella until much later. She was on interferon and the hep went into remission but when she stopped, it came back worse than before. Her health had deteriorated by then and she could not handle the side effects of interferon when she tried to resume it.
Her bones were extremely fragile. Her doctor broke three ribs just examining her. She told me she had the bones of an 80 year old woman.

Lisa's dad had the same combination that Lisa had, Hb Lepore beta thal. His was a milder phenotype and in his teens, he went 5 years without transfusing. Most likely, the beta thal gene he carried was not as severe a deletion/mutation as Lisa's. Even though he was born in the 1950's, long before any chelator was available, he still lived into his late 40's. I met him when Lisa was fairly young and he brought her into my store. I never knew him, but Lisa told me about coming in as a teen. It was many years later when we became friends. His name was Bart. In one of those "coincidental" moments in life, during the funeral procession for Lisa, a truck pulled across an intersection right in front of us. In large font on the side of the truck was one word. Bart.
Andy

All we are saying is give thals a chance.

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Offline Pratik

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Re: Dedication to Lisa
« Reply #33 on: January 31, 2013, 06:17:42 AM »
In one of those "coincidental" moments in life, during the funeral procession for Lisa, a truck pulled across an intersection right in front of us. In large font on the side of the truck was one word. Bart.
Oh my god! That means Lisa's dad were watching his baby come to him and did actually attended the funeral silently, what a coincidence or miracle, I may say. God is great, he sent her beloved Dad at her funeral, that's really...I have no words to describe.

-P.
Every child is special.

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Offline Rashmi

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Re: Dedication to Lisa
« Reply #34 on: May 24, 2013, 10:16:50 PM »
From the Angel's corner, I realize that Lisa was an epitome of  inner strength, love, kindness and friendship. She was positivity personified. The soul never dies and she is here watching us all in thalpal. These few lines are for her

Don't stand beside my grave and weep,
For I'm not there; I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sun on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning’s hush
I am the swift uplifting rush
Of quiet birds in circling flight.
I am the soft star-shine at night.
Do not stand at my grave and cry,
I am not there; I did not die.

                                (Mary Elizabeth Frye)
« Last Edit: May 24, 2013, 10:24:59 PM by Rashmi »
Rashmi


Keep calm and face.

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Offline Pratik

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Re: Dedication to Lisa
« Reply #35 on: May 25, 2013, 06:07:15 AM »
From the Angel's corner, I realize that Lisa was an epitome of  inner strength, love, kindness and friendship. She was positivity personified. The soul never dies and she is here watching us all in thalpal. These few lines are for her

Don't stand beside my grave and weep,
For I'm not there; I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sun on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning’s hush
I am the swift uplifting rush
Of quiet birds in circling flight.
I am the soft star-shine at night.
Do not stand at my grave and cry,
I am not there; I did not die.

                                (Mary Elizabeth Frye)

Wonderful.  :(
Every child is special.

Re: Dedication to Lisa
« Reply #36 on: June 26, 2014, 11:35:31 AM »
Lisa - Thank you ! Your inspiration has created this portal which is helping us all and humanity.

Thank you also to the admins et al of this group for maintaining such a useful website.

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Offline djema

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Re: Dedication to Lisa
« Reply #37 on: February 20, 2015, 07:59:11 AM »
Lisa, probably your soul heard my prayers and I found your site.... :sorrow

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Offline Manal

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Re: Dedication to Lisa
« Reply #38 on: May 14, 2015, 12:49:35 PM »
Rest in peace our angel :angel2 :angel1 :thankyou2

Re: Dedication to Lisa
« Reply #39 on: July 30, 2015, 03:26:36 PM »
May God your soul rest in peace.
though i am new here but now have great love to you dear sister Lisa, and great respect to you Mr Andy.

Re: Dedication to Lisa
« Reply #40 on: October 25, 2016, 08:03:22 AM »
Thank you Lisa for creating this site!

I thank God to have stumbled across this site. It means so much to us parents to be able to learn from the experiences of those who have thal. Reading posts from this site inspires me when I am down and I'm sure you'll be happy to know that Lisa that until now your work continues through Andy and have helped a lot of people. Great Job!

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Offline BabyRiya

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Re: Dedication to Lisa
« Reply #41 on: October 26, 2016, 08:24:31 PM »
We are so thankful to Lisa

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Offline JoR

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To Lisa
« Reply #42 on: February 24, 2017, 10:21:13 AM »
Unfortunately I never met Lisa, not in person nor in this virtual environment. From all accounts it sounds like she was a wonderful human being.
Lisa has left an incredible legacy through this website. I am sorry I did not meet you Lisa... but I am grateful to you  :heartred :heartred :heartred

 

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