Luke's homecoming

Sally Carter

The Information Point for Centronuclear and Myotubular Myopathy

When their son Luke was born in 2002 and diagnosed with myotubular myopathy, Sally and Flavio found themselves trapped in Portugal for eight years, with no way home but in April this year, after ten years and 360 days, Luke finally became a hospital out patient and celebrated his 11th birthday at home in Manchester. Below, Sally talks about her families journey and what it means to them to finally have Luke home.

Luke, Sally, Flavio and brother Sean.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.

We made several attempts to return home to the UK as Luke became more medically stable but were met with many barriers and obstacles. Most British nationals, without a chronically sick child, could repatriate to the UK at anytime but because Luke needed 24 hour nursing care and long term ventilation, it was a massively complicated process. As the years went by the situation got harder to deal with - 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.

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 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.

Luke, Sally, Flavio and brother Sean.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 were both excited and terrified at the same time but with the help of everyone who supported Luke's Air Ambulance appeal, we were 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.

Luke remained in the hospital he was transferred to for almost two years but in April of this year, 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.

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