As many of you know, my middle child Hugh was born very prematurely at just 24 weeks and 6 days weighing in at only 660g whilst on holiday in the Canary Islands in June 2012. After a long and arduous hospital stay, he was finally discharged home aged one year and one week with a tracheostomy. A tracheostomy is a breathing tube inserted via a stoma in the neck which feeds directly into the windpipe. For the first couple of years, Hugh was attached to a ventilator 24 hours a day which blew air into his lungs to keep them inflated. He had been diagnosed with bronchomalacia, a condition which meant parts of his windpipe were completely collapsing every time he breathed. As he grew bigger and stronger he was able to have time off from the ventilator, then relied on it only at night, eventually being free of it completely by the time he was 3.5 years. He had major airway surgery a few days after his fifth birthday and has been free of the tracheostomy every since.

Whilst he had the tracheostomy and particularly the ventilatory support, Hugh could only be looked after by people who were fully trained in tracheostomies/ventilators. In practice this was us, his night homecare nurses and the wonderful people at shooting stars. This was valuable respite and allowed us to take some time for ourselves and spend some time with Ted away from our otherwise very medicalised lives. We also had a support worker visit us at home fortnightly for a few hours and give me some much needed day respite. Shooting Stars were also wonderful leading up to Hugh's operation, helping him prepare a book for his "special adventure" and providing him and Ted with worry monsters to gobble up all their fears around what was happening.

I was terrified the first time we visited the hospice but it is truly an incredible place where we have many happy family memories. We have met some wonderful families who have also benefitted and continue to benefit from the hospice services.

The Sunrise Walk is the day after Hugh's 6th birthday and two days before his year anniversary of being tracheostomy free so its a particularly significant time for us as a family and feels like an appropriate way of commemorating the occasion.

Many thanks for your support.