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Propionic Acidemia

Laurenz was born on March 3, 2004, and is now three years old. He truly was the missing puzzle piece in our family. We also have a set of twins, Antonia and Kilian, who are six years old.

When Laurenz was born, he slept completely for two days straight, and had no appetite. In the first three days his body weight decreased 100g daily, and his body temperature steadily decreased 1°C each day. On the third day we decided to take him to a children’s clinic, and if we hadn’t done so he might have died a short time later. Initial blood tests showed a metabolic disorder. His blood was then sent to Heidelberg, where Dr. Hofmann made the diagnosis. Laurenz had Propionic Acidemia, a disease we had never heard of.

When Laurenz was 5 days old he was transferred to a metabolic clinic in Munich. A constant infusion of glucose was used to remove the poison from his body. Three days went by before he finally opened his eyes again.  After another three weeks he was released form the clinic, and we brought Laurenz home. He recovered relatively quickly, and soon developed normally according to his age standards. He slept through the night, and took his daily rations orally.

In August 2004, he began refusing food, and would shove the bottle out of his mouth whenever we attempted to feed him.  My mother-in-law and I stayed by him day and night, feeding him as soon as he slept.  In October 2004 we moved to Hannover, and introduced Laurenz to the staff at the Medical University of Hannover. At this point Laurenz was already in poor condition, losing weight and vomiting regularly.  Three days later we drove Laurenz to the emergency room, after another bout of continuous vomiting. Unfortunately, despite the emergency plan that we had brought with us, the situation was falsely evaluated.  Laurenz received his nutrients through a feeding tube – but he received the vital glucose infusion much too late. He suffered through seizures for about 12 hours.  Since that tragic night, Laurenz has been severely handicapped. He cannot crawl, walk, or stand, and speaks only about 30 words. Since then Laurenz receives his nutrients through a PEG feeding tube because he has completely lost his sucking reflex.

Laurenz is full of joy and life. Despite his disabilities, he can still move around by scooting on his bottom. We currently undergo different types of therapies with him, in the hopes that he might one day regain the ability to stand, walk, speak, and even eat by himself.  Caring for Laurenz is a labor of love, and we enjoy every day that we have with him. He has made our lives much richer, even when it’s sometimes more stressful and not always easy dealing with the jealousy of his siblings.

Haenigsen Niedersachsen   
From the Summer 2007 OAA Newsletter

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