Fundraising campaign launched after Scarborough baby receives heart-breaking diagnosis

Rio Valentino Brown was born on November 7, 2024, following a normal pregnancy, labour and birth.

Parents Michael and Sammyjo were delighted with the new addition to their family and took Rio home to be with his sister Giovanna.

At just two days old, baby Rio was re-admitted to Scarborough Hospital with jaundice and a suspected infection but discharged eight days later.

Sammyjo said: “We were enjoying being at home as a new family of four and finding our feet.

“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, until one day we were due to see the doctors again for a check up and I just felt in my heart he wasn’t right.

“I took him to A&E immediately, and after some investigations it was decided by the amazing team at Scarborough Hospital that he would be transferred to a larger unit with more resources as he was going downhill fast.”

Rio was rushed to Sheffield Children’s Hospital by ambulance and admitted to neonatal intensive care.

Seven gruelling weeks followed as Rio underwent investigations to discover what could be causing Rio to be in so much pain.

Sammyjo said: “The nurses were absolutely incredible with him, and all of us.

“Surgeons and gastro specialists from all over the country were seeing Rio and he was confusing them all, he even earned the title ‘Mystery Man’.”

Rio’s milk intake was stopped altogether to give his bowel a complete rest, and he was introduced to Total Parenteral Nutrition (TPN) - a food made especially for Rio in hospital’s laboratory to give him all the nutrients, vitamins, enzymes and essential fats needed to stay hydrated and grow, directly into a main vein through a cannula.

After numerous tests, investigations, biopsies, blood sugars and general anaesthetics in theatre, the family were given a heart-breaking diagnosis. Rio had Microvillus Inclusion Disease.

Microvillus Inclusion Disease (MVID) is an extremely rare genetically inherited intestinal disorder that is usually typically apparent within hours or days after birth.

The disorder is characterised by chronic, severe, watery diarrhoea and insufficient absorption of necessary nutrients due to incomplete development or degeneration of the surface cells in the wall of the small intestine.

Doctors were amazed that Rio managed for so long on breastmilk without becoming dangerously poorly - nearly 2 weeks!

The primary treatment is TPN. TPN provides long-term hydration and nutrition maintenance and runs alongside intravenous fluids that replace the excess output to avoid dehydration.

Sammyjo said: “Managing this involves us having to weigh every nappy that we change so we can monitor the fluid balance closely - and if too much comes out we have to replace it with IV fluids.”

Microvillus Inclusion Disease has no cure. The life expectancy of a child with MVID is three years.

Sammyjo said: “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.

“We are trying to keep things as normal as possible for her at pre-school and home, whilst also bringing her through to spend time with her baby brother, who she dotes on, and for us to have family time together which is when we are all at our happiest.

“Giovanna doesn’t see the wires, she just sees her happy baby brother and when she’s bigger she wants to be a ‘Purple Nurse’.”

The family is now hoping to bring Rio home in the next few months.

Sammyjo said: “This is absolutely life changing for us, Rio is going to need round the clock care for the rest of his life.

“We are currently going through intensive home TPN training daily, and need to make a clinical room at our home to ensure we can keep things as sterile as possible when we are giving and changing his TPN.

“The line that the TPN is given through goes into a main vein near his heart so avoiding any sort of infection is imperative.

“We have made a start on this already, but given that we are in Sheffield it’s incredibly hard. “But, he cannot come home until it’s ready.

“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!

“He is constantly surprising us and medical professionals how he is.

“All of his nurses and doctors constantly call in for a cuddle with him as he’s just the most gorgeous boy.

“We want to try and do everything and anything in our power to change the outcome of this diagnosis and we are going to need some help.”

Family friend Michelle Sharp said: "One of my closest friends, someone with a strength I have always admired, is facing a parent's worst nightmare.

“Rio, is bravely fighting a battle no child should ever face.

“A GoFundMe page has been set up to help the family navigate this incredibly difficult journey.

“Every donation, share, and message of support will make a meaningful difference.”

You can find the Go Fund Me page at https://gofund.me/9c836397

Sammyjo said: “Initially, the last thing I wanted was to do any kind of fundraising despite lots of people suggesting it.

“Obviously this has been such a massive shock and an incredibly hard thing to learn of in such a short period of time, but whilst talking to the team, we don’t know if somewhere down the line we may need money to fund medicine, treatment or operations, and the last thing we want is to have an option to improve Rio’s life and not have the funds to do it when or if we need it.

“So from our little family, if anyone can spare anything for our boy and contribute to improving his life and condition in some way we would be eternally grateful.

“We just want to give our baby boy the best life we can! And we will.”