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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  Leon was born 23rd March 2010, weighing 5 lb 3. He had stopped growing in the womb from 31 weeks, but we were told he would be healthy just small. Leon was born with bilateral cataracts, which were removed June and July 2010. Leon also spent 6 weeks in plaster from waist to feet from 3 weeks old due to abnormalities with his feet (we were given 2 possible diagnosis but doctors were not certain). Leon continued to have feeding problems and was not gaining weight so in July after meeting with a dietician he was prescribed high calorie milk and a feeding tube was discussed but something I did not want to happen not straight away. He was diagnosed as being profoundly deaf in June 10 and was given hearing aids whilst awaiting ct/mri scans to see if he could have cochlea implants.
During Leons operation on his eyes further problems were found which had to be investigated requiring further tests but the consultant spoke to me and told me that the vision he thought Leon could possibly have after the cataracts were removed had dramatically changed.

Leon was diagnosed with having cockayne syndrome type 2 in august 10 just 2 weeks before our holiday to Florida.

He had skin biopsy/mri/ct scan done in September 10. Leon had started suffering from convulsions and was due to go for an appointment the week he sadly passed away to see whether they were convulsions or something else.
Leon was a happy baby who bought so much joy to everybody who met him. He touched a lot of people’s hearts and will never be forgotten. He had started nursery about 3 weeks before he passed and was progressing in his own way. Everything he went through he was no trouble what so ever. He was a joy to have and an inspiration to his heartbroken mum.

Leon became a butterfly 16th October 2010 aged 6 and half months. He fell asleep peacefully next to his mummy and big brother Thomas.

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