Giovanni Guglielmo is a 5 month old baby born with an undetermined immune deficiency that is threatening his life. Giovanni's family and friends are working furiously to rally support for beloved Giovanni in an effort to save his life. The Guliamo family has gotten great media coverage and would like to thank all those that have found it in their heart to reach out to Giovanni and help with monetary donations, prayers and inquiries regarding bone marrow drives.
Please keep your prayers and support coming as Giovanni and family need all of the support that we can give them. Please help us rally support by supporting the media sources that have been so helpful such as The Boston Herald, The Union Leader and the Concord Monitor, who have graciously helped us to tell Giovanni's story and bring the much needed attention to the National Bone Marrow Registry and the Giovanni Guglielmo Fund. Funds will be used to help sponsor bone marrow drives, registry searches and support the Guglielmo family as they manage their lives and make their daily commute from Belmont, New Hampshire to Children's Hospital in Boston.
HEALTH UPDATE / ALERT (JANUARY 31, 2007)
Giovanni has taken a drastic turn for the worse and is very ill. He's losing weight and his intestines are bleeding. He's on a constant feed, and is throwing up most of the food when lifted up. He is getting weaker, and the smiles are becoming fewer and further between. We were given a preliminary diagnosis yesterday of NEMO, as well as 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. We are trying to learn everything that we can so that we can inform and educate Giovanni's supporters. The research available on the internet is sparse and very technical in nature. Please email any information you can find about NEMO, long-term effects, survival and/or quality of life to firstname.lastname@example.org. Per available information, children with NEMO have a 50/50 chance of survival. The doctors have informed us that, with the bone marrow transplant, Giovanni may be completely cured or only partially cured (immune deficiency corrected only) and that he could continue to suffer from other conditions of NEMO requiring longterm medications.
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