Luca loses fight with rare condition
Our son Luca sadly lost his fight with his rare condition called ROHHAD syndrome which only affects 75 people in the world. ROHHAD stands for rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation. It is a rare, life-threatening syndrome that affects the autonomic nervous system (which controls involuntary actions like breathing and your heartbeat) and the endocrine system.
Luca died at the University Hospital of Wales in Cardiff in the early hours of Saturday 25th November after suffering a hyponatraemic seizure two days earlier. Luca was just 11 years old and had a “zest for life”, he was diagnosed at 2 ½ but in his short life he lead a full life. Luca had a very energetic, enthusiastic, happy and colourful personality.
ROHHAD meant Luca had a host of health problems including repeated respiratory and cardiac arrests, which left him in intensive care. Luca also had to use a ventilator at night to support his breathing and had a 1:1 nurse to monitor him during the night. Despite taking medication and self-administrating his growth hormone injection, nothing ever got Luca down. He enjoyed swimming or doing Tae Kwon Do, gymnastics and drama.
The support we have received over the last few months has been overwhelming. We have been hugely supported by family, friends, our workplaces, pupils and the wider community. The sheer number of people at the funeral service demonstrate how much Luca was loved by those who knew him. The tribute song “I’m the King of the Swingers” sang by the Stagecoach troupe group (which involved some of our own pupils from Porthcawl Comprehensive) was a very fitting send off for Luca. We would like to thank everyone for the donations we received for Luca’s chosen charity “The ROHHAD Association”. We received contributions from Porthcawl RFC, local businesses, hospitals, collection after the School Carol Service, the 6th form Interact Group, Luca’s charity bike ride “Ride for ROHHAD” which took place in Cardiff Bay with children, friends and family from Headlands School, Penarth.
The support really has helped us through a very difficult time. Because of the love and devotion Luca received from his family and those around him he was able to pack a great deal of happiness into his eleven years, and that is something to be thankful for. In mourning the loss of a potential future let’s not forget what he achieved in the past, and the love and joy and laughter that he has brought to so many lives, and the wonderful effect that he had on just about everyone that met him.
My wife and I have always donated blood. About two years ago Luca and his younger sister came with us to the blood donation session in the Community Centre in Brackla. They were both very interested in the process and finding out how our blood can help other people. We talked about blood donation, bone marrow and organ donation. Luca agreed that they were all very worthwhile and agreed that if we can help people whether we are alive or have passed away then we should.
His parting gift was to give the amazing gift of life to a known three people with the potential to save others pending further tests. Luca’s kidney and pancreas went to a woman in her 40s, his other kidney went to a man in his 30s and his liver was donated to a teenager. Luca’s heart valves can also be used and are stored for up to 10 years.
Over the years we have been involved with many charities including Noah’s Ark, Ty Hafan, Y Bont, Make a Wish, Air Ambulance, 2Wish Upon A star. Many of you may remember that Luca opened the Ty Hafan charity shop with Elvis in Porthcawl. He also started the first ever Rainbow Run in Porthcawl town. Luca also won the Child of Courage category at the Bridge FM Local Hero Awards and appeared on Children In Need in 2015.
FACEBOOK – In Memory of Luca Pucella
Luca’s Ride for ROHHAD
5in55 (5 Peaks Mountain Challenge) – Ty Hafan
ROHHAD – Charity Football Match (HSBC)