A Busman's Holiday*

One of the positive things about this 22q journey is that it has enables us to meet some wonderful individuals and charitable organisations which have been helpful to us and many other people. Most of the time they hide from the limelight and their work is not generally know by the general public.

Although not directly related to 22q there is an individual and two groups that I would like to mention in this post.

In my blog "The size of a walnut - Day 3" I wrote about Sarah's heart surgery at Guy's Hospital when we were very fortunate to benefit from the skills of heart surgeon Mr. Conal Austin who performed such an intricate repair on Sarah's heart.

Mr. Conal Austin FRCS

Now many of us think we have stressful jobs but the stress I have at work is nothing to what I imagine Mr. Austin and his colleagues are under. If I have a bad day and make a mistake the bank I work for may upset a client or lose a few dollars. Worst case if I really screw up I might be on the receiving end of a P45 and the opportunity "to pursue other interests" but at the end of the day no-one gets hurt.

In the case of Mr. Austin and his colleagues an error can have fatal consequences. So you would think that when holiday time comes he and his colleagues would head to the nearest beach and do nothing more taxing that read a book. However you would be wrong.

Instead a team of doctors, surgeons and nurses from the Evelina London Children's Hospital donate their free time to go to Sri Lanka to perform heart surgery on seriously ill children.  The missions have two objectives the first is to perform life saving surgery and the second is to allow local surgeons and medical staff to develop their skills by watching and assisting the surgical team from London.

The trips are arranged by a UK charity http://www.takeheartmercymission.com/ of which Mr. Austin is a co-founder and trustee.

Mercy Mission first started when Mr. Austin met a patient called Jai Lameer who was originally from Sri Lanka. As a result of the meeting a team was established to travel to Sri Lanka to perform paediatric heart surgery. A total of 8 missions took place between 2000 and 2010. Following the death of Mr. Lameer in 2011 the new charity Take Heart Mercy Mission was established to carry on this work.

A 9th mission took place in September 2012 when a team of 14 volunteers assessed 137 children, and carried out 17 difficult heart surgeries over a period of six days of which 15 had a successful outcome. I would urge you to take a look at their website which shows video of the 2012 mission.

The second organisation is the Ronald McDonald House at Guy's and St. Thomas' http://www.ronaldmcdonaldhouse.org.uk/.  This was the first Ronald McDonald House in the UK and is run by The Evelina Family Trust. It runs a house with 20 family bedrooms which are offered free of charge to families of children being treated at Evelina Children's Hospital.

We live around 35 minutes by train from Guy's Hospital and when it was first suggested there might be a space at the house for us I thought it wasn't really necessary as we were so close to the hospital.  The Family Administrator persuaded us to take the room and this proved to be invaluable. At the time of Sarah's surgery the hospital was located at Guy's and the house was just 5 minutes walk from the hospital.

It was so good being close to the hospital especially when Sarah was in intensive care. On the day of her surgery I was at the hospital until late in the evening and took comfort from the fact that we were staying just around the corner and not a train journey away.

We stayed there for five nights but some families need to stay for many months and the house provides a refuge and tries to create a small piece of normality.  The House costs around £300,000 per year to run and the charity is raising funds to move to a new location in 2016 closer to Evelina Children's Hospital.

* Busman's Holiday - a holiday that you spend doing the same kind of thing that you usually do for your job.