A pioneering treatment has transformed the life of a youngster battling a multitude of health conditions. Nicola Jaques speaks to the family of Rory Curzon Smith.
Having defied the odds and proved his doctors wrong, Rory Curzon Smith returned to his Preston school this week with a big smile on his face.
It marked another amazing milestone for Rory and his parents Henry and Sally, who never thought the five year old would make it to school, let alone his second year.
Rory, from Fulwood, Preston was born at just 24 weeks and has a number of complex disabilities with sensory, neurological and mobility issues, chronic lung disease as well as problems with digestion.
In just 10 months the couple have seen courageous Rory’s quality of life ‘transformed’ thanks to the work of a pioneering treatment designed by a family team of specialists based in America. Now the pair, joined by their family, school and an army of supporters are determined to see through the personalised programme created by the Family Hope Centre in Philadelphia.
And after his summer break Sally says Rory was ready and raring to go for his first morning back at St Anthony’s RC Primary School in Fulwood.
He is such a happy boy but there would be nights and days on end when he was in so much pain and not really an answer as to why.
She says: “After being cooped up with me all summer, Rory was more than ready to get back school – I think he thought it would be a break!
“His favourite time in the summer was being outside bouncing on his trampoline wrestling with his friends.”
Next month, the family will host their first charity gala night to help raise awareness of the centre and help towards the vital costs.
Family and friends recognise the huge expenses ahead for the couple, who have adjusted their life to Rory’s disability and want to help provide them with access to every possible therapy.
This year Henry raised £3,500 after running the London Marathon, just a fraction of the £7,800 annual bill on top of Rory’s Conductive Education and other costs.
A former secondary school teacher, Sally is now full-time carer to Rory. She says: “Just how far Rory has come in 10 months is incredible – he started his life on 32 medications and now he is on none.
“The results we have achieved in this short space of time – it is priceless.”
Sally described the first and early second trimester of her pregnancy with Rory as ‘perfect.’
Her first signs of something not being quite right occurred on a visit to her parents in Preston while the couple were living in York. Sally became unwell and began to experience cramping pains.
She says: “My waters broke by the time I reached A&E, and Rory was partially born before they even had chance to move me to neonatal.”
Born at 24 weeks, Rory weighed just 1lb 13oz.
Sally says at the time, the couple lived by the hour – with consultants unable to determine his chances of survival.
“We were told with Rory coming so early he chances were less than 10 per cent and then we were told if he did make it, there was a risk of some brain injury but to what extent we had no idea.”
Against all odds Rory battled through, with his loving parents by his side.
Sally adds: “My introduction to life as a mum was spending every day with Rory, watching his stats – seeing through the process of all his medications.
“We’d leave him at night time and come back the next morning and go through the same thing again.
“The day we left hospital, I was left thinking ‘what do I do now?’”
Rory spent seven months in the Sharoe Green neonatal unit at Royal Preston Hospital. After briefly returning back to their home in York, the couple re-located to Preston, where they had better access to resources for Rory’s needs.
It was after a particular traumatic time two years ago, when Rory was forced to undergo another three month stay in hospital with health complications, that Sally and Henry began to look at alternatives to help get to the root of Rory’s disabilities.
She says: “Every time we thought we had got somewhere, Rory would have a ‘hiccup’.
“He is such a happy boy but there would be nights and days on end when he was in so much pain and not really an answer as to why.
“He has spent so much of his life in and out of hospitals, here, Alder Hey in Liverpool, Manchester, Sheffield.
“At times it really has been touch and go – Rory knows how to give us a scare. As a parent, you’re just determined to find the answers.
“A lot has been put down to the fact he was premature but that has never helped us with the solutions.
“Then someone told me about a family with a little boy who doctors said may never walk or talk properly who had tried this ground breaking treatment via the Family Hope Centre and now he walks two miles to school everyday with his mum.
“I was sceptical at first but we needed something. As life was, it wasn’t good for Rory, it wasn’t good for me.
“I picked up the phone and I’ve not looked back. It has been life-changing.
“Not so long ago we were at the hospital for one of our routine appointments and we bumped into one of the consultants from the early days.
“He stopped us and said “Wow, I’m sorry for writing him off in the early days, He’s shown me!”
“It’s those little things which show how far we’ve come.”
She says their hopes for Rory’s long-term future have changed completely and she regularly shares Rory’s progress through a Facebook page: RorysRecFund - a journey of hope.
The Family Hope Centre treats children with special needs and developmental delays.
The family were given a rigorous two-day assessment, followed up with a specialist personal plan with recommended special exercises and therapy intended to stimulate Rory’s brain.
“From nutritionists to neurologists, a range of specialists assessed Rory and each added something to the programme – they are helping Rory to almost re-teach himself.
“The idea is that he can tap into different parts of the brain, which most of us don’t use and start again.
“The first thing I was asked was ‘to tell them about Rory’ and I listed every single of one of his health issues. The lead consultant stopped me and said ‘No what about Rory’.
“In that second I realised I had been defining and labelling Rory his whole life by his conditions The programme gives you a whole new perspective and I feel it is my job to do Rory justice and give him a fair chance.
“Usain Bolt didn’t win Olympic medals by not working at it everyday and it is the same for us. It’s not always easy but I look at where we are 10 months down the line. Rory is already a lot stronger, a lot more vocal. Just seeing happy and more relaxed Rory is, I know we’re doing the right thing.”
Rory’s exercises have been designed to take his brain and body back to basics from the stages a baby would go through – such as crawling – up to walking.
The programme also has a rigid diet, Sally prepares meals five times a day with no dairy, gluten or sugar and limited fruits.
Sally adds: “Rory is such a happy, cheeky boy. His teachers and therapists are always telling us about his special sense of humour.
“There was a time we couldn’t have even imagined Rory making it to school at all – he was in so much pain, in and out of hospital.
“So to have him in mainstream school with his friends everyday is just massive.”
The couple would welcome any sponsorship/ donation of prizes for the raffle and auction for the gala night in October. Tickets to the black tie charity gala evening cost £35 or £300 for a table of 10.
The ticket price includes a three-course meal and entertainment. There will be a auction, raffle and photo booth on the evening. Tickets are available via Rory’s journey of hope Facebook page or by contacting Sally on: 07971590562. Visit: www.facebook.com/RorysRecFund