It was with lots of joy that Lilian came to the world on August 3, 2002.
However, not long after he was born I noticed that his behavior was very different then other children his age. Lilian never smiled, and did not follow me well with his eyes. We also noticed that he had developed a hematoma on his skull. In November of 2002, on the eve of his three month birthday, I entered into his room to find Lilian having a seizure and convulsions.
For the next year he was hospitalized several times as we tried to figure what was wrong with him. The doctors told us that Lilian suffered from epilepsy. Finally in January 2004, after a number of various tests and examinations he was diagnosed with the terrible disease of Menkes.
For the first month, we totally panicked, we were even afraid to enter his room in the morning because we feared that he might die during the night. Then we learned to cope with his disease, our enemy. We learned ways to position his body when he slept to keep him from aspirating.
During the first few months that followed the diagnosis, we tried many treatments. Then we found certain medications that seemed to work best and for the last 3 years Lilian always has been using the same medicines, including anti-seizure medicine. Because of when he was diagnosed Lilian was not been treated with copper injections. Lilian always had several appointments of physical therapy each week. He also had an adapted seat because of his scoliosis. We also made sure to have oxygen treatment at our house because Lilian also suffered from asthma.
Lilian's younger brother really helped stimulate him and keep him active. He loved listening to music, especially when I danced to it. He also loved the sounds of animals in the house as well as the sounds of his little brother.
Sadly our little boy Lilian died on November 16th, 2008. Lilian recently turned six years old, far exceeding what doctors originally told us when he was diagnosed. He has brought us so much happiness and love, we always hoped he would be with us forever.
Thank you for this website and for raising awareness of Menkes disease. To visit Lilian's website click here.
Lilian’s Mommy Laurence
Posted: November, 2008