Julian B


	Julian B ~ ‘Wizards, Knights & Dragons’

DATE OF BIRTH: July 31st, 2007

ILLNESS: Severe Sub-Glottic Stenosis & Lymphangioma.




		Hi there, just wanted to send an enormous 'THANK YOU' to all those involved in stitching and putting together Julian's quilt. It is absolutely stunning and he utterly adores it. He is only just starting to talk and he calls it his 'special' . He sleeps with it on his bed and when he is awake, he is VROOMING his little matchbox cars all over it. He has been doing really well lately, no surgeries lately, but always on the cards at any point, however, we have our fingers crossed that this won't be for a little while. He is still having a few health concerns, and had to be put on an emergency dose of steroid the week he received the quilt, so his gorgeous quilt came at a very appropriate time for a little boy that was feeling very unwell and his gift from you certainly put a very big smile on his face. Words cannot express our gratitude and appreciation, it is something that Julian and our family will always treasure. Thank you, from the bottom of our hearts. Love, Julian, Cleo (sister), Kirsty (Mum) and Robbie (Dad). xox


			Julian’s Quilt Stitchers: Australian Anne~Lismore, Julie~Beerwah, Sally~Caboolture, Sharon~Casula, Tamara~Canberra. International Carole~UK, Debi~USA, Gayle~USA, Iara~Brazil, Jeanie~USA, Joan~USA, Julia~USA, Julie~USA, Nessie~USA, Patricia~NthIreland, Sharon~USA, Susan~Canada.

BIOGRAPHY

Julian (JuJu) was born via Caesarean Section a healthy 3.6kg beautiful baby boy. He gave the entire operating theatre and us a huge surprise when he arrived as he had a large mass on the left side of his neck that was larger than a man’s fist. Further investigation showed that his ‘bubble’ was a Lymphangioma, with elements of Hemangioma, a benign tumour that would require injections when he was to be 4-6 months old.

At 3 months of age, out of the blue, Julian began working too hard to breathe, he had contracted Respiratory Syncytial Virus (RSV) and unable to cope, he was rushed to the Paediatric Intensive Care Unit where he was ventilated for 2 weeks. During this period of ventilation, he also contracted severe Hemopholus Pneumonia, his lungs collapsed three times, he got a Bladder Infection and a Blood Infection. After healing from these Bacterial and Viral infections, Julian showed great respiratory distress, whereby he was diagnosed with Sub-Glottic Stenosis; his airways had been traumatised and had narrowed, essentially ‘breathing through a straw’. At 4 months of age he underwent his first operation, a Cricoid Split where his surgeons widened his airways, meaning another week of ventilation in ICU and more time in hospital.

In his first year, Julian, through multiple admissions spent over a quarter of his life both in Intensive Care where he was tube-fed, and on the ward at our local children’s hospital. His second operation at 9 months old saw that his airways were still significantly narrowed and the OK432 injections on his bubble proved to be a failure as his Lymphangioma did not respond accordingly. It had, however, dramatically reduced in size with the Blood Infection at 3 months.

JuJu still has respiratory problems, and a common cold makes him very sick, usually resulting in his requiring oxygen in hospital again. This means that he is never able to enter into any form of child care, his immune system being too weak to handle it. Julian has a wonderful team of 7 surgeons/specialists working on his case. Julian will undergo another surgery in the next few months, this time entailing cartilage grafts to reconstruct his airways. Julian faces many more surgeries and more lengthy stays in hospital to ensure that he is able to breathe properly.

Despite having such a rough first year, my little man, whom I love and adore, is the most wonderful, cheeky and handsome boy who lights up the room the minute he gives that mischievous grin of his.

Written by Julian’s mum.