Luke’s coming home

This story from the Carter family first appeared in the Information Point newsletter Our World in 2011 and 2013. Sally and Flavio, a British family, had found themselves trapped in Portugal for eight years, with no way home after their son Luke was born with myotubular myopathy, meaning he was too frail to travel. However, in April 2013, after ten years and 360 days, Luke finally became a hospital out patient and celebrated his 11th birthday at home in Manchester. Sally wrote for The Information Point about the families time in Portugal and the events that led to Luke finally coming home.

Our son Luke was born in the Algarve, Portugal in 2002. Unfortunately the Algarve does not have the medical or financial network in place to support home care, so until 2011, my son Luke had spent his whole life on the same Portugese hospital ward. Luke did not know that the outside world existed, never mind the things that we all see and experience each day, such as cars, people, weather and trees. My husband Flavio and I visited and cared for Luke on the ward, whilst also working full time.

Luke has spent his whole life in the same ward and does not even know the outside world exists, never mind the things that we all see and experience each day, such as cars, people, weather, trees – the list is endless.

In spite of several attempts to return home to the UK since Luke became more medically stable, we have been met with barriers and obstacles because this is a very unusual situation. Most British nationals, without a chronically sick child, could repatriate to the UK at anytime but because Luke needs 24 hour nursing care and long term ventilation, it has been a massively complicated process. And the situation was proving harder to deal with as the years went by – like all parents, we simply wanted to be the sole carers of our child and enjoy a normal life at home, enjoying evenings, weekends, birthdays and Christmas together.

However, we persevered, making contact with organisations in the UK we hoped could help and in 2011 we had a breakthrough, the news we had been dreaming of, confirmation of referral and transfer of Luke to a hospital in the UK and a bed at the Royal Manchester Children’s Hospital.

We launched a fundraising appeal with the help of the charity Dreams Come True, to pay for the air ambulance to get Luke back to the UK and and in April 2011, Luke was flown home. For the first time in his life Luke had the opportunity to get the proper medical care and equipment that he needed and to receive a structured education.

As you can imagine, moving home with a sick child, let alone moving countries is a stressful time that involves much preparation and organisation; we are both excited and terrified at the same time but wanted to thank everyone who supported Luke’s Air Ambulance appeal and let you know how very grateful we are for your support. We are now within touching distance of Luke being able to experience what we all take for granted on a daily basis and a step closer to finally having Luke live at home with us for the first time.

We would also like to say a special thank you to Wendy Hughes from the Myotubular Trust, who has been wonderful throughout this whole process, which has now been going on for 14 months! We could have not done it without her by our side, as we would have more than likely given up at the first hurdle, through lack of knowledge and ignorance of our rights in the UK.

I had the pleasure to meet Wendy and her family, including Zak here in Portugal last October and she was able to meet Luke, which was wonderful. It was great to meet another mum who has a child suffering from the same condition. It made me feel less isolated. Wendy has been like a mum, sister, friend, secretary, lawyer and guidance counsellor all in one and no amount of money or gifts would be big enough for us to really say ‘Thank You’.

Luke remained in the hospital he was transferred to for almost two years but finally became a hospital outpatient and a few days later he celebrated his 11th birthday, with his family. We would like to thank all of the people that helped us get Luke to the UK. It is fabulous having him home after all these years and we are all lapping up every moment and every new experience – spending time together as a family, seeing dogs, horses, fireworks. Myself, Flavio and Luke’s brother Sean are all so happy and I have never seen Luke look so content.