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JOIN THE REGISTRY, CALL DKMS AMERICAS!!!! Every day, thousands of patients just like Giovanni are searching for a matching marrow or blood cell donor--someone just like you—who is committed to giving patients with life-threatening diseases a second chance at life. To join the Registry, you must be 18 to 60, in good health and committed to helping any patient in need. To join online, visit www.dkms.org The registration process is very simple. Once you register online, you will receive a kit in the mail. The kit contains everything you need including kit instructions and a postage-paid return envelope. When you mail back the kit, your tissue is typed and your name is added to the national Registry. If you are a match, DKMS will contact you for further evaluation. RAISE AWARENESS Please share this opportunity to save a life with your friends, family members or associates. Encourage them to join the global movement of more than 10 million volunteers who are committed to giving patients a second chance at life. STEPS OF MARROW AND BLOOD CELL DONATION 1. Join the Registry. Volunteers must be between the ages of 18-60 and meet the health guidelines. 2. Stay committed and available. Doctors search the Registry to find a donor whose tissue type matches their patient’s. If you are chosen, your donor center will contact you. If you agree to proceed, more testing will be scheduled. 3. Attend an information session. If you are called as a match and agree to proceed, you will meet with staff from your donor center to learn about the donation process, risks, and side effects. You are free to bring a friend of family member. You will be told which source of blood-forming cells is being requested—either collected from the marrow or the circulating blood (known as PBSC donation). You will then decide whether or not to donate. 4. Receive a physical exam. If you agree to donate, you will be given a physical exam to discover if donating would pose any special risks to you or the patient. MARROW DONATION • Marrow donation is a surgical procedure. While you receive anesthesia, doctors use special, hollow needles to withdraw marrow from the back of the pelvic bone. Many donors receive a transfusion of their own previously donated blood. • Side effects and Recovery. You can expect to feel some soreness in your lower back for a few days or longer. Most donors are back to their normal routine in a few days. Your marrow is replaced within four to six weeks. • Follow-up. Your NMDP donor center coordinator will follow up with you until you are able to resume normal activity. You will also receive annual calls for long-term follow-up. PBSC DONATION • PBSC donation takes place at an apheresis center. To increase the number of blood forming cells in the bloodstream, donors receive daily injections of a drug called filgrastim for five days before the collection. Your blood is then removed through a sterile needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to you through the other arm. • Side effects and Recovery. You may experience headache, or bone or muscle aches for several days before collection. This is a side-effect of the filgrastim injections that you receive to increase the number of blood-forming cells in the bloodstream. These effects disappear shortly after the collection. • Follow-up. Your NMDP donor center coordinator will follow up with you until you are able to resume normal activity. You will also receive annual calls for long-term follow-up
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SaveGiovanniGuglielmo.org Baby Giovanni drives have added 27,095 donors to the registry and located 21 life-saving matches
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My name is Carolyn, I am the Director of the New Hampshire Chapter of Save Giovanni. THIS IS THE OFFICIAL SITE FOR SAVE GIOVANNI GUGLIELMO!!! There is another site on here for Giovanni, unfortunatley, it is not run by anyone in the family or within the network of supporters. By setting up this official, parent account, I will be able to answer any and all questions regarding bone marrow donor drives, donations and anything else that can possibly be thought of. Please feel free to ask me any questions, I will do my best to answer all of them as quickly as possible! Please visit http://helpgiovanniguglielmo.org, the official family website for more information!
Giovanni was born July 24, 2006 an apparently healthy baby to Christina M. Poulicakos and Michael A. Guglielmo. After six-weeks home Giovanni had an elevated fever and was taken to his doctor. He was sent home under the belief he simply had a cold. After several days his temp persisted, he wasn't eating and he was very irritable so Christina took him back to the doctor and requested a blood and urine culture.
He was subsequently admitted to Concord Hospital, NH, and given what was described as a shotgun blast of different antibiotics. We were later told Giovanni was infected with a bateria know as Klebsiella. After a week at Concord Hospital he was transferred to Massachusetts General Hospital (MGH) because his blood cultures continued to come back positive regardless of all the antibiotics he received. Subsequent blood cultures returned different strains of klesiella and after several different mixtures of antibiotics Giovanni broke out in a terrible rash. The antibiotic mixtures were changed and the bacteria was eventually killed. While at the hospital Giovanni had numerous blood tests, a blood transfusion, and a pic line was surgically inserted. He was then returned to Concord Hospital to finish his 14-day course of antibiotics.
Giovanni was released and we ostensibly resumed our lives with our beautiful newborn. However, in order to treat his skin condition, which became leathery and scally, we had to rub him down with different lotions . One day we discoverd a lump on his right shoulder, which turned out to be a staph infection. A staph infection derived from his own skin that was broken-down from his skin condition. He recieved seven days of oral antibiotics. While home he also had chronic diahrea, which we believed was simply the breast milk going through him. Giovanni was spitting up most of what we fed him or expelling the remaining milk in loose bowel movements.
After several weekly checkups Giovanni was deemed failure to thrive and we returned to MGH for a routine followup with infectious disease and hemotology. When the doctors saw Giovanni's skin condition we receved an emergency appointment with dermatology and he was diagnosed with severe eczema. An appointment was also made with a gastro intestinal doctor whom found blood in his stool, and concluded he had an allergic condition to milk and soy products and prescribed Neocate.
The Neocate seemed to work for several days but he spiked another fever and we returned to Concord Hospital where we pleaded to remain because of the 100 mile distance to Massachusetts General from our Belmont home. But Giovanni's doctors insisted on the transfer in his best medical interests because of the more advanced medical technology and care in Massachusetts.">Banner generated at Pimp-My-Profile.com

1/31/2007----------We were given a preliminary diagnosis yesterday of NEMO, plus a second gene mutation that is not identified to any existing disease. NEMO is a very rare x-linked chromosomal disorder. Giovanni's is described as a severe NEMO requiring a bone marrow transplant. Only seven children were treated for NEMO at Childrens Hospital since 2000, and I'm trying to learn everything I can so that I can inform Giovanni's supporters. The research on the internet is sparse and very technical. Please email any information you can find about NEMO about long-term effects, survival, quality of life to mguglielmo@helpgiovanniguglielmo.org. One thing I read is that children with NEMO have a 50/50 chance of survival. The doctors have further told us that even with the bone marrow transplant Giovanni may be completely cured or while the immune system is cured he could continue to suffer from other conditions of NEMO requiring longterm medications.
NEMO (X-linked NFkB Essential Modifier Deficiency), is a very rare and severe immune disorder which means one can't fight off germs. There currently are only a small number of NEMO survivors in the country and 60 worldwide. NEMO is the name of a gene that regulates functions of the immune system. NEMO is like a "master switch" that is found on the cells of the human body and regulates signals between the cell membrane and the cell nucleus. NEMO is expressed in almost all tissue cells. If NEMO is not present life is not possible. NEMO stands for Nuclear Factor Kappa B Essential Modulator, which is a protein used for communication between the membrane and the nucleus. A bone marrow transplant replaces the faulty immune system and missing NEMO protein with a normal and healthy immune system. How's that for a simple explanation?
Giovanni was saved from a cord blood donation and had his transplant on March 21, 2007. We are nearing the one year mark and through it all, he has remained strong. He still has a few more hurdles to overcome, such as the ED.
Although Giovanni has been saved by cord blood, we continue to host bone marrow drives. Our goal is to add 100,000 people into the registry. With the help of DKMS, we are reaching for that goal. We also have teamed up with the American Red Cross to host drives at most of the blood drives here in greater New England. In 18 months, we have added over 15,000 people into the registry.
Help us reach that goal and host a drive of you own.a>babyPhoto Sharing and Video Hosting at Photobucket
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Donna Y





Jul 10 2009 2:41 PM


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Child Of God





Jul 10 2009 5:29 AM










Coombster1000





Jul 4 2009 4:54 PM

Always Keep those who keep you free, in your heart and in your prayers!


Kathys comments

Have a safe and good day.
Denise
Dee: Supporting Kids & Kritters





Jul 4 2009 1:06 PM



Love,
Dee & Sammy
In loving memory of Romie





Jul 3 2009 3:23 PM


Comments by ZingerBug.com
Jessica.





Jun 22 2009 7:36 PM

I read your story in Women's World!!
I saw the picture, and I was like "Holy COW! THAT'S GIOVANNI! I have him as a myspace friend!!"

It was totally awesome! Giovanni, I'm so happy for you, and I would LOVE to be a bone marrow donor!!
www.webstarts.com/makeusstrong





Jun 21 2009 3:20 PM

If you haven't already, don't forget to visit my site at www.webstarts.com/makeusstrong

You can connect more to make a difference!  Here is a Youtube channel I have here so you can view my videos

http://www.youtube.com/user/makeusstrong

Facebook
http://www.facebook.com/profile.php?id=1042736434

Twitter
http://www.twitter.com/makeusstrong

Yahoo group
http://groups.yahoo.com/group/makeusstrong/


ZenZuu
http://profiles.zenzuu.com/profiles/makeusstrong.htm


Other social networking will come up so if you have another social networking than those, let me know and I'll get started!

Valerie





Jun 18 2009 9:16 PM

I hope Giovanni is doing well... I would like to hear how he is doing....
take care :-)
A Place for All Angels





Jun 18 2009 3:48 PM

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Jun 16 2009 12:54 AM




Have a great week:)
~♥~Lisa~♥~





Jun 14 2009 7:47 AM


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Miracles ~ Remembering Ben & Family...


Online Now!


Jun 12 2009 7:29 PM

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~♥~Ms.Ginnette is the BeSt!~♥~





Jun 5 2009 1:40 AM


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Jennifer





Jun 4 2009 5:08 PM

This comment was sent by your friend via the Hotties For Sale! app. To block this app and all communications from it, click Here.


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SaveGiovanniGuglielmo.org, just sending you a kiss to brighten your day. Come check out the Hottest Users on MySpace with me on Hotties For Sale!

Brooklyn's Mommy and Gary's Wifey





Jun 2 2009 2:58 AM

""Beautiful Mommies on myspace! Once you've been hit, you have to hit 8 awesome Moms. If you get hit again you will know that you are really beautiful (or just have the same friends as...your friends..)! it's always nice to hear that someone thinks you're Beautiful!


Before I was a Mom I never learned the words to a lullaby.


I never thought about immunizations.

Before I was a Mom - I had never been puked on.

Pooped on.

Drooled on.

Chewed on.

Peed on.

I had complete control of my mind and my thoughts.

I slept all night.


I never looked into teary eyes and cried.

I never got gloriously happy over a simple little grin.

I never sat up for hours watching a baby sleep.


I never felt my heart break into a million pieces when I couldn't stop the hurt.

I never knew that something so small could affect my life so much.

I never knew that I could love someone so much.

I never knew I would love being a Mom.

Before I was a Mom - I didn't know the feeling of having my heart outside my body.


I didn't know that bond between a mother and her child.

I didn't know that something so small could make me feel so important and happy.


I had never known the warmth, The joy, The love, The heartache, The wonderment or the satisfaction of being a Mom.

I didn't know I was capable of feeling so much before I was a Mom.


Send this to someone who you think is a special Mom , I just did.

And remember that behind every successful mother... Is a basket of dirty laundry""
Brooklyn's Mommy and Gary's Wifey





May 29 2009 6:45 PM

This comment was sent by your friend via the Hotties For Sale! app. To block this app and all communications from it, click Here.


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Hey SaveGiovanniGuglielmo.org, just showing you some love by sending you a Kiss.



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May 25 2009 8:10 PM

...*Azie-One*...





May 25 2009 6:54 AM

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                       Wishing you an awesome meaningful day......

                                             ~ AZ1
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May 25 2009 12:47 AM

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Thanks for making the Roy Moore 2010 governor unofficial, your friend. Spread the news that we need (moore)friends for Judge Moore. I don't think you will find a more honest man, we need more men like him in office. Feel free to contact me with any ideas that will help get him elected.

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Zach
For A Angel By The Name Of KELSEY SHELTON BRIGGS





May 24 2009 9:28 PM












Dee: Supporting Kids & Kritters





May 19 2009 2:28 PM

In loving memory of Romie





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