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

Wednesday, June 18, 2008 1:00 PM CDT

Hi all,

Things are still pretty great around here. Ethan had his school sports day yesterday. The weather held off and all the kids seemed to really enjoy it. Ethan has made vast improvements with his balance, stamina and co-ordination and although he is still way behind his classmates I can really see the change in him.
The event also really made me realise what a great decision I made by changing his school 2 years ago. The teachers are all excellent and the head teacher is definitely one of the best ones I have ever come across. Also the older kids were so good with all the little ones during all the activities, It actually brought a tear to my eye to see all the 4/5 year olds running the final race and all the 10/11 year olds cheering them on.

We have a busy few weekends ahead now with a lot of fun stuff going on. This coming weekend I am taking Ethan to see the Incredible hulk at the movies with his friend and his mum. Next weekend we are visiting Legoland with my sister and little nieces. The one after Doug is takong Ethan to an airshow and the following one we are meeting friends at Sundown advernture land. Theses are all friends who have a child with liver disease who I have met through liver families support group. Finally, if that isnt hectic enough we are off to the New Forest on holiday for a week on the 19th July!! By the time we return it will only be 4 weeks to Ethans 7th birthday.

Well, I think that is pretty much it for now. Ethan gets assigned his new class for year 3 tomorrow and reports will be out soon so I will update then.

Love, Danielle and Ethan xx

Links:

E-mail Author: danisleigh@ntlworld.com

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