Amy and Friends - Cockayne Syndrome Support Amy and Friends - Cockayne Syndrome Support

Bertie Butterfly is kindly sponsored by Holly Lodge School for Girls, Liverpool.


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  Kayden was born 17th Nov 2009.

After a week in the NICU he was sent home deemed healthy. 2 months later he was in hospital for a week having cataracts taken of both eyes. Then he was back and forth to Dr's because he could not eat. Kayden was getting very little because he could not suck at all. And he always was congested. At 5 months he was rushed by ambulance into hospital he could not breath and was showing signs of not being able to thrive.he spent 6 weeks in the hospital when after alot of talking and fighting for someone to listen he ended up with a Ng tube. But that took 6 weeks they placed it the day before we went home. We seen a genetics dr and he did some tests and said I will get back to you. We didn't hear back for almost a year. In this time kayden had a g tube placed and had another eye surgery and contacts were placed in his eyes.
Kayden threw up every day multiple times a day. And always gaged. He never grew much in that first year.
And no mild stones were met for him. I had kayden during the day everyday and then he would go home to his mom. I took kayden to all his appt and therapy every week. In 2012 kayden came to live with Ken and I. He was still throwing up every feed and he had a few more eye surgeries. In 2012 kayden had a fundaplication done to hope he would not throw up anymore but that didn't happen. He then had a gj tube placed and they had us feeding him around the clock. But kayden was still getting sick and he gained so much weight he couldn't move so back to a g tube we went. Kayden was always such a happy loving boy. But kayden did not sleep. He was awake most of the time. He would nap a bit during feeds but that was it.
Sorry kayden got his diagnoses in 2011.

Kayden was happiest when he was home and could play with his own things. He didn't like to travel much. He hated the car dr said cause his spine was so bad he couldn't get comfortable. Kayden had many trips to hospital for sleep studies and med changes. He spent many weeks in hospital. Kayden could not take the sun at all. He would burn very quickly and even in the shade. He wouldn't open his eyes outside but would put a very bright flashlight in his eyes. In 2013 the pain in his body was really getting to him Dr's really tried helping him. He ended up on oxygen at night he just could not keep breathing without help. In may of 2014 kayden started his decline. He was on 24 hour oxygen and pain meds had to be increased alot. Kayden had it all seizures throughout his life pain unable to use his body the way it should. But through it all kayden showed nothing but love. Kayden was one very amazing boy the light of lives. And ken and I are very proud to be able raise this amazing boy.kayden
Kayden passed very peacefully at home in my arms Aug 24 2014.

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