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 has not been treated with copper injections.

Soon Lilian will be six years old, far exceeding what doctors originally told us when he was diagnosed.  Lilian has several appointments of physical therapy each week. He also has an adapted seat because of his scoliosis.  We have oxygen treatment at our house because Lilian also suffers from asthma.

Now that Lilian has a younger brother, he has become a lot more active, and more stimulated.  He loves listening music, and when I dance to it.  He also loves the sounds of animals in the house as well as the sounds of his little brother. 

Lilian brings us so much happiness and of love, we hope he is with us for a very long time.

Thank you for this website and for raising awareness of Menkes disease.  To visit Lilian's website click here.

francais

Posted: April, 2008