'We are desperate to make memories’: Fundraising campaign launched after Scarborough baby receives rare, heartbreaking diagnosis

When she visits her younger brother Rio Brown in hospital, big sister Giovanna “doesn’t see the wires”. “She just sees her happy baby brother,” mum Sammyjo says. “We are trying to keep things as normal as possible for her at pre-school and home, whilst also bringing her to spend time with her baby brother, who she dotes on, and for us to have family time together. It is when we are all at our happiest.”

By Louise French

Published 14th Mar 2025, 11:50 GMT

It hasn’t been easy for the Scarborough family following the birth of four-month-old Rio in November last year. Parents Michael and Sammyjo were delighted with the new addition to their family and took Rio home to be with his sister Giovanna.

But at just two days old, he was re-admitted to Scarborough Hospital with jaundice and a suspected infection, then discharged eight days later.

“We were (then) enjoying being at home as a new family of four and finding our feet,” Sammyjo explains. “Rio was amazing but we noticed he was struggling to put weight on and he was opening his bowels really frequently, but that can be quite normal with breastfed babies so we weren’t terribly concerned.”

But one day, Sammyjo felt in her gut that Rio wasn’t well and took him back to hospital. He was taken from Scarborough to Sheffield Children’s.

Seven gruelling weeks followed as Rio underwent investigations. Then the family were given a heart-breaking diagnosis. Rio has Microvillus Inclusion Disease.

The extremely rare genetically inherited intestinal disorder is characterised by chronic, severe diarrhoea and insufficient absorption of necessary nutrients. Symptoms occur due to the incomplete development or degeneration of cells in the wall of the small intestine. A large number of patients do not survive past early childhood.

Sammyjo says: “We are still trying to come to terms with this devastating diagnosis, it’s horrific and we are struggling with what our future may look like. On top of this we have our beautiful daughter Giovanna to consider.”

Rio has been introduced to Total Parenteral Nutrition (TPN) - a food made to give him all the nutrients, vitamins, enzymes and essential fats needed to stay hydrated and grow, given directly into a vein through a cannula.

The family is undergoing TPN training in the hope of taking Rio home in the next few months. He’ll need around-the-clock care for the rest of his life, Sammyjo says.

“We are desperate to get home and make memories to treasure as a family, just the little things that you take for granted when your children are medically well. Rio is amazing. He is the happiest, smiliest, softest boy and anyone that meets him falls in love with him. And he looks so well, which makes it all the more difficult.”

A GoFundMe page has been set up for the family so people can “contribute to improving his life and condition”. More than £35,000 has been raised. To donate, visit gofund.me/9c836397