Stacey was born on 11th June 1995 and by all accounts was a normal delivery. At two days old Stacey had refused breast milk and would not drink 4oz feeds either. On the third day she had a projectile vomit and cried for six hours. This was unusual for her as she had been a quiet baby. I started to feed her 2oz bottles every two hours and she took them well without being sick. I honestly believed that I wasn't "winding" her properly. At one week old, Stacey began to make "jerking" movements and I called out an emergency Doctor who reassured me that it was nothing like Meningitis, but to see my own Doctor first thing in the morning. My Doctor did two reflex tests on Stacey then turned to us and said, I'm sorry to have to tell you this but your daughter has brain damage and we need to admit her straight away. Two days later we were on our way to another Hospital in Bristol, where they could do more intensive tests to find answers. On the 17th day, we were told that we were close to losing her and after further investigations they now knew that Stacey had a Metabolic Disorder called ArgininoSuccinic Aciduria, but she would have to go to Great Ormond Street Hospital in London the very next day. Once there she began to put weight back on now that she was taking a milk solution with Arginine and Sodium Benzoate. At 4 weeks old we were learning how to insert N.G tubes so that we could take her home. We were having to visit G.O.S.H every month for the first year, but recently have been going every four to six months. Stacey has an enlarged liver, but no other problems that an ultra sound could pick up. She has a developmental delay of about 18 months and has Lax Ligaments, she also gets 1-2-1 help at school for 20 hours a week. Stacey has physiotherapy once a month and has speech therapy on a weekly basis. She has not been admitted to hospital now for over a year with a metabolic problem (touch wood) as her immune system is becoming more tolerant with bugs and viruses. At the moment she can have 23 grams of protein a day but is still always hungry. She no longer has Sodium Benzoate but has Sodium Phenylbutyrate instead. She is a very happy little girl and people always comment on how polite and good she is. I am so chuffed at what she has achieved so far, she seems to refuse to let anything get her down and she is a very determined little lady. She brings so much laughter into everyone's life.
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