Ethan was diagnosed with a rare genetic condition called alagille syndrome in june 2002. This is a multi system condition affecting the heart, liver, eyes, kidneys,facial features and bone structure. It occurs in only 1 in 100,000 live births, so we were very unlucky. sufferers can show some or all of the symptoms, and ethan has all of them apart from the kidney disorder, although he suffers mainly with his liver. Since then life has been full of ups and downs. We struggled to get him to gain weight and grow at first. He was so malnourished he actually had ricketts and a suspected leg fracture. He was delayed with his crawling, walking and general mobility. He suffers really badly from pruritis and itches so badly some nights that he screams in his sleep and draws blood from his little legs. We tried a new treatment called marrs therapy in oct 2004 which flushes all of the bile salts out of the blood. We hoped this would clear his itch for a while but unfortunately it was unsuccessful. Since then ethan has had a new medication for high cholesterol and has been put on a low fat diet. He also has the heart condition but this is not too severe and only requires yearly monitoring. when he was diagnosed it seemed like our life was not worth living. I have found though that sick children have that something extra. Ethan is loved by everyone he meets and is the most loving, sharing, unselfish boy i have ever met. We just take his condition one step at a time, and hope that in the future there will be more ways to help ethan and others like him.

Journal

Friday, August 1, 2008 3:16 PM CDT

Hi everyone,

We returned from a lovely weeks holiday last saturday which Ethan really enjoyed. We went to the New Forest and satyed in a traditional log cabin. I visited the same place as a child and stayed in the exact same cabin so I knew he would love it. The weather was beautiful all week and we all got a little tanned. We took our cycles with us and went on a really nice 7 mile bike ride one day taking in all the breathtaking scenery - Ethan was shattered!!!

The countdown now is for Ethans birthday in just under 3 weeks. He is having an awesome party at the local indoor play area which I have hired out privately so nobody else can come in! Ethan and 35 friends will have it all to themselves. He is having a Ben 10 Birthday cake and hopefully a Ben 10 pinata too. The party is in the evening so during the day we are taking him to Drayton Manor Park with his friend Alex. For presents we have bought him a new bike, games for his wii and DVD's. He is growing up so fast now, sometimes it is almost like having another adult in the house! He was just discussing today how he will be able to start driving lessons in 10 years time... he makes us laugh!!

I have taken some photos on holiday so ad doon as I get around to uploading them I will update the photo album.

Love,

Danielle and Ethan xx

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E-mail Author: danisleigh@ntlworld.com