Rio Valentino Brown -`♡´-

We’ve set up this fundraising page with permission from Sammyjo and Michael to share Rio’s story and updates

Hi everyone, we just wanted to give everyone an update on our situation and explain a few things - we are inundated with messages of love and support but just don’t have the time or sometimes strength to respond all the time - hopefully this will give you all an insight to our situation and explain as much as possible.

Our beautiful boy Rio Valentino Brown was born on 7th November 2024 after a completely normal pregnancy, labour and birth. He was re-admitted to our local hospital on day 2 with jaundice and a suspected infection but then discharged and we returned home 8 days later. 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 amazing team in Scarborough hospital he would be transferred to a bigger unit with more resources as he was going down hill fast.

We were rushed to Sheffield Children’s Hospital by ambulance that night and Rio was admitted to the neonatal intensive care. The following seven weeks were gruelling and spent in NSU testing and investigating for so many different things that could be causing Rio to be in so much pain, 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’.

His milk intake was then stopped altogether to give his bowel a complete rest, and he was introduced to TPN - Total Parenteral Nutrition - this is food made up just for Rio in hospital’s lab and gives him all the nutrients, vitamins, enzymes and essential fats that he needs to stay hydrated and grow, directly into a main vein through a cannula.

After numerous tests, investigations, biopsies, blood sugars, general anaesthetics in theatre….we finally got the heartbreaking diagnosis. Our gorgeous, brave baby Rio has 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 doctors are absolutely amazed that Rio managed for so long on breastmilk without becoming dangerously poorly - nearly 2 weeks! The disorder is characterised by chronic, severe, watery diarrhea and insufficient absorption of necessary nutrients due to incomplete development or degeneration of the surface cells in the wall of the small intestine.

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

Microvillus inclusion disease has no cure. The life expectancy of a child with MVID is 3 years old.

We are still trying to come to terms with this devastating diagnosis, it’s horrific and we 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. She doesn’t see the wires, she just sees her happy baby brother and when she’s bigger she wants to be a ‘Purple Nurse’.

Rio will likely need a liver transplant at some point as his liver won’t cope for long periods on TPN which is the downside of TPN. He will be on TPN for his whole life. He may also need a bowel transplant at some point however there are of course risk factors in this too.

1 - We don’t know if this would be successful quite frankly

2 - A bowel of his size may not become available

The plan going forward is for Rio to come home, hopefully in the next few months. 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 goes into a main vein near his heart so avoiding any sort of infection is obviously 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.

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.

Love to you all and thank you.

Michael Sammyjo, Giovanna and Rio Brown ❤️