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

Sunday, January 18, 2009 1:41 PM CST

Well, it has been 5 months since our last update and quite a bit has been happening here!!
It is all quiet on the health front and Ethans last few check-ups have all gone smoothly with no problems to report. We are still waiting for a cardiology check-up as the hospital keep postponing it but I take that as a good sign.
Ethans 7th birthday passed without a hitch. He spent the day at Drayton Manor with his friend Alex and had a great party in the evening with loads if school friends. He loved his new bike and has really built up his confidence riding without stabilisers.
We returned home 2 weeks ago after spending christmas with family in America. We all visited New York together for 3 days which was a great experience which I would love to repeat one day. We all ahd a lovely christmas together and enjoyed spending time with the family... In fact none of us wanted to come home and we all got quite emotional at the airport!
Ethan is doing great at school and has made real progress this academic year, I am really proud of him. He enjoys going to school a lot more now too which makes it a lot easier all round.

Well, slightly late but Happy new year to all!!!

Danielle and Ethan. xx

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E-mail Author: danisleigh@ntlworld.com

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