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Name Comments
64) Dana  Female
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1)
Tuesday, 18 March 2008 01:07 PM Host: 72-173-39-23.cust.wildblue.net Write a comment

Originally posted 2/28/2005

I am a second year medical student who got her first introduction to Wilson's disease in a lecture this week. My notes read "Wilson's disease-autosomal recessive disorder of deficient copper excretion, akinetic rigid syndrome with wind-beating tremor, dystonia, chorea, blah, blah, blah, blah." It wasn't until I stumbled across Jeff's website that I realized the suffering Wilson's disease caused. I will recommend Jeff's page to my classmates and won't ever forget his story. Thank you for putting the time into this web site.
63) Fran  Female
Location:
Philadelphia
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Tuesday, 18 March 2008 01:03 PM Host: 72-173-39-23.cust.wildblue.net Write a comment

Originally posted 2/19/2005

Hello again,
I just want to say what a wonderful person you are to comfort so many. You are special in your caring for others. MAY GOD BLESS AND KEEP YOU SAFE. We all need you Patrick. Your loss is our loss also, and know I am here for you also!
The world needs more like you.
62) ToniAnn Spunar  Female
Location:
Harper's Ferry, WV
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Tuesday, 18 March 2008 12:59 PM Host: 72-173-39-23.cust.wildblue.net Write a comment

Originally posted 2/19/2005

Oh, what a wonderful site. Thank you. I hadn't been here before. Have known about my Wilson's condition for 1 year now. I have liver presentations. Hit me suddenly at age 58. so far, so good. Go to specialists at U of Virginia. I certainly will look up to the heavens and call on Jeff to help me through...still scared, still learning, yet apparently still improving. I feel very fortunate that I have not had the neurological symptoms (though have two sibs that have had neuro-psych issues)...one diagnosed with Ms at age 30 and one who had sudden psychotic episode about age 40...they had screening tests for wd and came out OK???!! God bless you and your family. Thanks for such a thoughtful and helpful site.
61) erika marie  Female
Location:
PA
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Tuesday, 18 March 2008 12:54 PM Host: 72-173-39-23.cust.wildblue.net Write a comment

Originally posted 1/31/2005

I really like this site and how it makes people aware of Wilson's disease. I have it myself.
60) Dan Hall  Male
Location:
New Jersey
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Tuesday, 18 March 2008 12:47 PM Host: 72-173-39-23.cust.wildblue.net Write a comment

Originally posted 12/8/2004

Patrick, this is the first time I have had an opportunity to visit Jeff's site and I wanted to compliment you on the effort you have put into helping other Wilson's families. Having been through it all with my daughter Samantha for the past 3 years, I can't imagine the strength and determination you must have to keep at this after what you went through with Jeff. It's all I can do some days to get out of bed, even though Sam is much improved and hopefully she will get even better over time.

I was only one incompetent doctor short of being in your shoes, and only a lucky decision to get Sam transported out of a bad hospital to a better one at 2AM one night when she stopped breathing saved her from Jeff's fate.

Again, I commend you on your efforts and dedication to the Wilson's family. You have created a fine legacy for Jeff.
59) Michele  Female
Location:
boca raton, FL
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Tuesday, 18 March 2008 11:23 AM Host: 72-173-39-23.cust.wildblue.net Write a comment

Originally posted 11/13/2004

Dear Patrick,

I've vistied the site quite a few times, but always, forgot to sign the guestbook. The story of you and Jeff and everything you've gone through have made such an impact on me, and will help me with my girls.

You have probably reached more poeple than you even realize, people forget to sign the guest book!

I WILL NEVER STOP FIGHTING THE FIGHT!

Thank you for everything you've done.

Its a privilege to know and count you as a friend.
Michele
58) Lynn  Female
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Tuesday, 18 March 2008 11:15 AM Host: 72-173-39-23.cust.wildblue.net Write a comment

Originally posted 11/10/2004

I am a student nurse and was assigned to do a report on Wilson's disease. I came across your website and it literally brought me to tears. It was very informative and I know that it has probably brought and will continue to bring comfort to those who are going through or have gone through what you and your family have. I want to thank you and your son for posting your lives. I now have a new interest in wanting to take care of those with Wilson's Disease. You both have impacted my life. God Bless.
57) Patrick Dirlam  Male
Location:
Arroyo Grande, CA
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Tuesday, 18 March 2008 11:08 AM Host: 72-173-39-23.cust.wildblue.net Write a comment

Originally posted 11/10/2004

Today is your 28th birthday son. Congratulations wherever you are. Thanks to all the kind people who have visited this site. I hope it has encouraged some, enlightened others and has been an inspiration to all. Those of you who did not have the privilege of knowing my son can be assured that he is everywhere now, watching over us all with his famous smile and big blue eyes. If you need cheering up, just ask him and you will suddenly feel good and warm all over. Look up into the sky and you may see a rainbow just over your shoulder meant just for you!
56) Nick Macjayn  Male
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1)
Tuesday, 18 March 2008 11:04 AM Host: 72-173-39-23.cust.wildblue.net Write a comment

Originally posted 11/3/2004

Wonderful site. You're providing usefull info to the world. Thank you.
55) Fran  Female
Location:
Philadelphia
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Tuesday, 18 March 2008 11:02 AM Host: 72-173-39-23.cust.wildblue.net Write a comment

Originally posted 10/30/2004

So beautiful tribute to a wonderful son and his wonderful family. Many hearts are turned your way, forever!
Some things have no answer, but we have our friends and their kindness, never to forget.
GOD BLESS YOU
54) Suzanne Heaton  Female
Location:
South Australia
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Tuesday, 18 March 2008 10:57 AM Host: 72-173-39-23.cust.wildblue.net Write a comment

Originally posted 8/11/2004

I was profoundly moved by Jeff's story. My father had Wilson's Disease and suffered severly from the neurological damage as well as poor societal treatment, living with the stigma that is associated with disability. I'm so sorry for the pain that Jeff went through.
53) Joann Kaden  Female
Location:
Bishop, CA
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1)
Tuesday, 18 March 2008 10:41 AM Host: 72-173-39-23.cust.wildblue.net Write a comment

Originally posted 7/8/2004

:heart:
This is a wonderful tribute, Pat. I know it's hard for you, but don't stop until it's all finished.
Love, Mom
52) israel reyes guzman  Male
Location:
nogales sonora, mexico
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1)
Tuesday, 18 March 2008 10:37 AM Host: 72-173-39-23.cust.wildblue.net Write a comment

Originally posted 6/29/2004

les mando un saludo cordial desde mexico a todos ustedes y que dios los bendiga.
51) Richard Bouvia  Male
Location:
Syracuse, NY
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1)
Tuesday, 18 March 2008 10:36 AM Host: 72-173-39-23.cust.wildblue.net Write a comment

Originally posted 6/7/2004

I too have Wilson's and it has caused so many problems in my life. I can relate to the hell that it causes. I am so sorry for your loss.
50) Lori Hromada  Female
Location:
Syracuse, NY
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1)
Tuesday, 18 March 2008 10:32 AM Host: 72-173-39-23.cust.wildblue.net Write a comment

Originally posted 6/8/2004

Excellent Page..Very Informative..Sad that in our time of days now that everyone can't be cured...And we have to lose so many to this nasty disease before they can save em all...
Someday they will..I have faith in that..
49) Tommy Ferreira  Male
Location:
Durban South Africa
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Tuesday, 18 March 2008 09:47 AM Host: 72-173-39-23.cust.wildblue.net Write a comment

Originally posted 6/7/2004

As a father to my son Devon (20 yrs) who has WD. It is good to see that there are loving people out there in the world who provide the time and energy to inform and assist others who are in the same boat. I thank you for the contact. We have been very fortunate our Doctors are really great and diagnosed Devon within days. I also insisted that all sorts of blood tests together with an MRI scan be carried out which I think helped.
Love and light
Tommy
Durban South Africa
48) Ezeh Maga 
Location:
Holland
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1)
Tuesday, 18 March 2008 09:43 AM Host: 72-173-39-23.cust.wildblue.net Write a comment

A nice site I really like it. I have landed here000000000000000000000000000
bye guys!!
47) Patrick Dirlam  Male
Location:
Arroyo Grande, CA
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1)
Tuesday, 18 March 2008 09:39 AM Host: 72-173-39-23.cust.wildblue.net Write a comment

Originally posted 4/21/2004

To all who have shared in Jeff's story on this site:

Wilson's disease did not kill Dawn (Fran Slawnyk's daughter). The uncaring medical establishment did as they did to Jeff. Dawn had been placed in a convalescent hospital where the uncaring staff basically wrote her off. The doctors did not understand Wilson's disease and didn't appear to want to learn anything about it either. She did not receive the care she deserved and now there are three beautiful children and a grieving mother left behind.

This has got to stopp!! The medical community has to be held accountable for not doing everything they can to help a person with a rare disease when they don't understand it, they simply ignore it and any problems that arise are blamed on this "rare" disease. This is what killed my son and this is what killed Dawn! We must continue to educate the medical community on this serious matter. Many doctors are incredible and want to learn everything they can to help their patients, but there are those who are just like a bad car mechanic, only they destroy a person and their family's lives, not cars! Please pray for Dawn and her mother Fran and know that Dawn and Jeff are now in their rightful place watching down on all of us!

Patrick Dirlam
46) Teena  Female
Location:
Mt. Dora, Florida
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1)
Tuesday, 18 March 2008 09:24 AM Host: 72-173-39-23.cust.wildblue.net Write a comment

Originally posted 4/16/2004

Thank you very much for sharing this site with me. I am very sorry for your loss. Also thank you for reaching out to Melissa and our family.
45) Penny  Female
Location:
Hight Desert, CA
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1)
Tuesday, 18 March 2008 09:19 AM Host: 72-173-39-23.cust.wildblue.net Write a comment

Originally posted 4/10/2004

I'm truly sorry for your loss. I found your website while visiting my cousin Brittany's site. I'd never heard of Wilson's Disease until Brittany was diagnosed with it. Your site is wonderful. You have provided a lot of information on your site that may help others. Thank you for sharing your story.
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