| it was a bad emergency, she had to be put under artificial respiration.
God blessed us again, and Giulia was saved for the second time by the same specialist. Since then
she is much more under stricter diet/supplementation control. And this makes the difference.
We use special aproteic food, she has 12gr proteins/day, arginine 5 times a day, Sodium phenylbutyrate 2 gr /day, + vitamin addition, UCD and integration with Basic P. Giulia accepts her diet/medicines very easily. Her mental development is carefully followed and, although global delay, she is improving. I see that in some areas, like paying attention, understanding, walking, running, toileting /dressing she has improved with very good will and I would say that in those areas now she is 90% normal, others like speech or writing are still markedly delayed and we have to work hard. Giulia attends primary school with a 24 hour support/week, and her writing is slowly arriving. She is very proud of that and shows very good will. Shis is followed weekly with a Feuerstein/therapist, and our psychomotricity. Logopedy did not really help, although when she plays stories alone or when she plays theatre at school, phrases get much more fluent. Giulia loves life, although she has suffered so much. She is very active, was started also with swimming lessons this year, and this was a success. My impression is that the physical activity makes her more prompt. Giulia is getting stronger, also in character. For instance, her favorite slogan is "I do it myself". Ciao, I hope we can be always so positive as our children are. Assunta, feel free to email me. |
| Giulia Valeria Pizzigoni Milano, Italy |
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| This is the story of Giulia, as told by her mother, Assunta. Pregnancy was OK, I did all possible tests because it was my first pregnancy and I was already 38. Giulia was born on February 6th, 1996 small and under weight. After a lot of problems, she went into her first coma at 4 days. She was transferred to the emergency on February 14th. There she was visited by a specialist, who leads in Milano one of the Center for Metabolic Disorders. She is a great doctor and diagnosed ASA for Giulia. Dr. Parini saved Giulia, the baby was fed with G tube and supplied with arginine. Giulia started improving and when she reached Kg3.5 (7.7 pounds circa) we were able to go home. With ups and downs Giulia was growing, she started walking late - at 18 months- and speaking at 30 months. If she had any fever or shock, she would have episodes of seizures. December 2001, after chicken pox vaccination and high fever, Giulia had her worst coma. Briefly: |
| Giulia's information as of April 2004 |
| Contact Person: Assunta Caruso Birthday: February 6, 1996 Email: [email protected] Age at Diagnosis: 4 days Home: Milano, Italy Siblings: None Other Diagnosis: None Protein allowance: 12 grams Meds: Arginine, Sodium phenylbutyrate, vitamins, UCD2 Developmental Status: Globally delayed |
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| Guilia and Jim V. meet in the Summer of 2005 |