Thomas Robert Joseph Doherty was born on 6th June 2010. During the pregnancy we knew that there was a significant chance that he would be born with a rare genetic disease that had affected previous generations of our family, however it was a still shock when the doctors confirmed our worst fears the day after he was born – Tommy had a neuro muscular condition for which there was no cure.  We were told that Tommy had a life expectancy of  two to three weeks.

We spent the first three weeks of Tommy’s life at The Winnnicott Foundation in St Mary’s Hospital in Paddington where a variety of tests were conducted.

Once the tests had been completed we were encouraged to leave the hospital for a less medical environment where we could really enjoy some quality time with our son.  As Tommy required 24 hour care, going home was not really an option and the hospital recommended we move to the Shooting Stars Hospice for the final few days of Tommy’s life.

The hospice is an amazing place set up purely for the care of children.  Tommy had his own room opening onto a terrace and garden.  The hospice had a variety of special rooms designed to entertain and stimulate the children.

The hospice also recognises that the best approach for child care is holistic, therefore there is as much emphasis on care of the parent as there is on the child.  As parents we had our own double bedroom and private bathroom and as the hospice aims to run a one on one service we had nurses available to look after Tommy 24 hours a day, to look after us with endless cups of tea, bring us all our meals or simply to give us a break.

We almost immediately noticed a change in Tommy.  In the first week Tommy visually improved; engaging much more with his parents and clearly being stimulated by his surroundings – particularly in the sensory room and at bath time.

We spent three weeks at the hospice before Tommy passed away – at least two weeks longer than anyone had expected.  We believe the extra time we had with Tommy was due to the amazing care we were given, the relaxed environment and the love he received from his family but also all the staff.   Shooting Stars helped us to make Tommy’s short life longer and happier than we could ever have expected when he was born.

Shooting Stars is entirely reliant on charitable contributions and requires £3 million every year (£8,000 a day) to maintain the care services and with no long-term statutory funding, the majority of this comes from voluntary donations.  We’ll never forget the support we received and the best way we can say thank you is to help raise funds so that they can continue their amazing work and help other families who find themselves in similar need.