Sally and Flavio are a British family who for the last eight years have found themselves trapped in Portugal, with no way home after their son Luke was born with myotubular myopathy, meaning he was too frail to travel. Below, Sally writes about their time in Portugal and the events that have 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 we have spent all of Luke's life visiting and caring for him in hospital, 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 recently received 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 the good news is that Luke will be flying home on 14 April. Luke will now have the opportunity to get the proper medical care he needs, he will begin to get proper equipment and a structured education for the very first time.
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's Air Ambulance appeal is currently ongoing - Dreams Come True have kindly offered to hold any funds collected, over and above the amount needed for Luke's air ambulance, to go towards paying for the essential equipment Luke will need to live at home. If you would like to give, please visit Luke's Air Ambulance appeal page.
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