Rowan from Shropshire, who was given a life expectancy of just three years old when he was born, has recently celebrated his 18th birthday in Disneyworld Florida thanks to a big team effort to get him there.
Rowan was born 10 weeks premature in Cyprus to a military family, mum Sharon and dad Paul, who was serving across there. The family were told that Rowan was born with brain damage which could affect him in all sorts of ways, and that he was unlikely to live beyond three years old. The family were devastated but determined to give Rowan the best life possible. He was initially diagnosed with cerebral palsy with vision impairment and feeding problems and as time went on, he thankfully passed the three year mark, but his condition became more complex. As Rowan got older, he was diagnosed with dystonia, scoliosis and epilepsy amongst other things.
Rowan’s overall condition is called PMLD which stands for Profound and Multiple Learning Disabilities. This means he has very serious learning difficulties, plus other challenges, like physical disabilities and health problems which makes it hard for him to do everyday things without a lot of help.
The family moved back to the UK in 2009 and were posted to Shropshire. Rowan had a few occasions of serious illness over his 18 years where it was touch and go. The last time Rowan was seriously unwell dad Paul promised him: “If you get through this, we’ll take you to Disney World.” Thankfully resilient Rowan slowly got better and now it was time to make this promise come true, but it wasn’t going to be easy. People with PMLD usually need a lot of support to communicate, move around, and take care of themselves and need special care and attention.
Rowan is under the palliative care team at Alder Hey to help control some of his symptoms associated with dystonia including pain, and is seen by Dr Lynda Brook, Paediatric Palliative Care Consultant. The family approached Dr Brook about going to Florida and she was determined to make it happen.
Dr Brook said “All the little things we may take for granted, needed extra care and consideration for Rowan and it took planning of epic proportions, but we rallied the teams and did it the Alder Hey way. Rowan is now on overnight oxygen, so the flight would be a risk as we had concerns his oxygen would drop. The respiratory team including the lung function team and respiratory physios went above and beyond and did various tests with all different variables to ensure Rowan would be able to manage the flight, pharmacy/medicines information unit went to the same measures and ensured he had the right medication which was really difficult to source, he also needed enough medical supplies to last the entire trip. We pulled out all the stops to make Rowan’s dream come true.”
Thankfully their efforts paid off and Rowan went and experienced the magic of Disney in April this year.
Mum Sharon said “Thank you from the bottom of our hearts for going above and beyond. Because of your dedication, compassion, and tireless support, what once felt impossible became a dream come true. We are forever grateful. Rowan had the most amazing time. It has also given me and his dad Paul confidence to do things that we previously thought might be impossible. The highlight of the trip for Rowan was a spectacular Moana-themed (sensory water adventure) trail at one of the Disney theme parks which he loved so much, we went through 6 times on one particular day! He also enjoyed the daily swim in the heated pool which helps to sooth and relax his muscles”.
We made memories to last a lifetime.”
The family are already busy planning what’s next for Rowan’s 21st….