'We want Rúben to carry on smiling - and live the life he deserves'

But despite his happy outlook, Rúben is, sadly, facing a lifetime of treatment and support after being diagnosed as having suffered brain damage.

Born three months prematurely, he endured 43 days in various hospitals as he fought to survive his traumatic arrival.

Now, he and his parents Catia and Richard face another battle after they were told that Rúben has quadriplegia spastic cerebral palsy, which means he may never walk or talk and limits movement in all his limbs.

They are determined to do all they can to ensure Rúben can live as fulfilling a life as possible, and they are now appealing for help through the Rúben’s Journey appeal with the charity Just4Children to raise money for treatment and physiotherapy for their little boy.

Catia and Richard, who live in Boston received the heart-breaking diagnosis on their son’s first birthday last January.

“When we were told about Rúben’s brain damage and how it will have a serious impact on Rúben’s life, it was very overwhelming and challenging,” said Catia.

“Even though we knew that something wasn’t quite right with Rúben, it it was devastating hearing it and being confirmed by a healthcare professional. It was every parents’ worse nightmare.

“As a parent this is not what you want to hear nor want for your child. Nothing can prepare you to hear such news. I think we’re still coming to terms with it all. But we have a strong family unit and we believe that together we can make through anything. We love Rúben unconditionally.”

Catia says the quadriplegia spastic cerebral palsy diagnosis means that all four limbs are affected; he has stiff arms and legs, and poor trunk control, as well as muscle spasms, poor balance and co-ordination. His condition affects all aspects in his life, he can’t sit unaided for long, and he can’t walk or talk, she said.

“We also have been told that because of the brain damage he might develop cognitive and behaviour difficulties too. But the future for Rúben is still unknown, and as a family we try to stay positive and focus on how we can help him.

“As his parents we want what it is the best for Rúben and do anything to help him. We believe that the earlier the intervention the better the outcome.”

She said the couple would be forever grateful to the NHS and all the professionals involved in saving Rúben’s life, but NHS services were very stretched and couldn’t provide all the care he needs.

“It only offers Rúben occupational therapy once every few months, and physiotherapy once a week. Then it’s up to the parents to do the exercises that the physiotherapist gives us.

“We are and always have been committed to the multiple exercises and home therapies that we have been set to do and we try our very best but we are not specialists and don’t have the skills or equipment that physiotherapists do.

“We feel frustrated that Rúben is not able to access what we think would be helpful for him but we are keen to make sure he doesn’t miss out on anything and we aim to optimise his chances in life.

“The money that will be raised is so important because it will help us to get Rúben these services privately along with the equipment that he might need in the future for as many years as possible!

“The longer we can keep these therapies going the more Rúben is more likely to be able to become independent and reach his full potential in life.”

She said of her son: “Rúben is a cheeky two-year-old little boy who had such a tough start to life but he fought all the way and he made home.

“Rúben carried on and had many ups and downs throughout his two years of life, but this has not stopped him. We call him our little sunflower because sunflowers are happy flowers and seeing him grow brings us so much joy.

“He is such a little fighter and greets everyone with a cheeky grin on his face, that is how he deals with the challenges thrown at him. Our wish is for Rúben to carry on smiling throughout life, have as much independence as possible and be able to live the life he deserves.

“He doesn’t do anything that a normal two-year-old does. We feel like we have missed out on so much and we are still missing out as new parents because Rúben has never hit his milestones, so when he does reach a goal set for him we are overjoyed and we don’t take anything for granted.

“Every achieved goal not matter how big or small, we acknowledge this and celebrate it with Rúben.”

To show their thanks to the people who helped Rúben’ to survive after his premature birth, Catia and Richard raised £3,200 themselves in various ways a couple of years ago, including through Rúben’s Charity Ball, held at the Poachers Hotel in Boston in November 2019 .

They raised the money as a gesture of gratitude to the health service teams and organisations that helped after his birth, including SOS Pilgrim-Call To Action, the Emily Harris Foundation, CenTre Neonatal Transport, and the Pilgrim Neonatal Unit.

Now Catia and Richard are looking for help themselves with the costs associated with care over the coming years, and have set up the Rúben’s Journey appeal.

You can support Rúben’s Journey through the Rúben’s Journey Just Giving page here

Or you can Text RUBENSJOURNEY to 70085 to donate £5 (Texts cost £5 plus one standard rate message)