2011

 

Between 22nd and 24th July 2011, we held our first family conference/retreat. With generous funding from Awards For All, this event was a momentous occasion for families from all of over the UK and Ireland. Held at Carden Park, Cheshire; this venue was perfect for everyone’s needs with exceptional service and location.

The medical advice came from professionals who very kindly participated in the following sessions:

Claire Bowe, Specialist Oxygen & Vaccinations Nurse

A talk on how vaccinations are created, how they work specifically focusing on chILD children and their benefit.

Rona Young, Dietitian

This talk focused on how to create high calorie diets ‘healthier’ with information on nutritional supplements and texture modification, also a talk on probiotics and how to get the ‘best’ out of your dietitian.

Emma Nicklin, Oxygen Nurse and Mark, LOX technician, courtesy of Airproducts.

This session focused on health and safety, making the most of getting out and about on oxygen, and also allowed the parents to play around with a large range of oxygen equipment including liquid oxygen.

Dr David Lacy – Paediatric Respiratory Consultant

This session was an in depth introduction to the lungs. Looking at embryology and lung formation, to lung structure and how chILD is diagnosed. A case study of ABCA3 was shown with tips on how to read x-rays and CT scans. Pathogenesis of some chILD diseases was discussed also.

It was such a liberating experience for the chILD families. Meeting one another, being face to face and sharing experiences; it was evident that this was a powerful medium of contact. The highlight was the children getting to know one another. They were all comfortable in each others company and built friendships that we hope will continue after the event.

Our 1st conference was a great success and we would like yo thank all of the families and guest speakers attending. We would also like to thanks our sponsor Awards 4 All; without them the event would not have been possible.

Gallery From The Event