Reaching Rowy

Dear Friends,

Today we are launching a fundraiser towards getting our son Rowan (3) to the Stem Cell Institute in Panama, for Mesenchymal Stem Cell Treatment.

Why?

Rowan was a completely normal child up to two years old. He met all of his milestones, walked on his first birthday, enjoyed a fantastic 2nd year of life learning to talk and explore the world around him, interacting with his peers and his family at home and at nursery.

Gradually from his second birthday, we noticed that his vocabulary was decreasing. Over about 5 months, he went from being able to count to 10, naming his family members, talking about what he observed, and putting words together into simple sentences, to only using 5 or 6 very basic words for what he needed, and nowhere near as clearly as he had been previously. For example ‘drink’ became ‘frik’. ‘Breakfast’ became ‘bre’. Help became ‘hap’.

Alongside this he also started stimming. Rowan makes a lot of loud, indistinguishable babble when he is stimming and excited, and makes roaring sounds to express himself. All while jumping up and down, flapping his hands, outstretching his arms. When we first noticed the stims, he would all of a sudden be taken over by what looked to us like an electric shock in his brain and his body would go stiff. He has no interest in other children. Once enthusiastic about books, he will not let us read any books to him now, and has been watching the same TV show for the last year and a half, almost like he is stuck. We can barely communicate with him.

He is a totally different child to the one he was before 2 years. It’s affected our lives so dramatically, and has been nothing short of awful to watch and live with. Personally we feel we have had very little support from our health system, and that his condition has been blanket covered by a term that can mean so many different things and put onto waiting lists, which isn't helping him and we feel strongly that he is getting worse.

Doing our own research, his symptoms pointed towards a diagnosis of Autism. But the nature of how this came about led us to look deeper. We connected with hundreds of other parents around the world going through the same.

We strongly believe that something has happened in our son’s brain to cause a build-up of inflammation, and we are doing everything we can to reduce that inflammation. Through changing his diet, eating organically where possible, deep cleaning our home, doing tests to make sure there are no underlying bacterial or viral infections in his body, and testing for any deficiencies.

The treatment that we have seen having the most dramatic effect is mesenchymal stem cell treatment, and we have seen enough testimonials and evidence from parents we have spoken to, to try our very best to do this for our son.

What is Mesenchymal Stem Cell Treatment?

The treatment itself is several IV injections of allogenic umbilical cord tissue-derived stem cells (so relatively non-invasive) over a number of days, which attack areas of inflammation in the body. The treatment is not dangerous, the stem cells do not become anything once inside the body, they only get rid of the bad stuff.

Other parents have told us how their children started talking and having better cognitive function again in the months after the treatment.

This treatment is not available in the UK, but is offered in several other countries. We have decided to go to the source, and have chosen the Stem Cell Institute in Panama founded by Dr Neil Riordan, one of the main pioneers of stem cell treatments, to get the very very best for our boy.

The target of £15,900 would cover the treatment itself and the flights to Panama. We will be holding fundraising events and doing as many things ourselves to get there, because we are 100% sure this is the right thing to do.

We are very happy to answer any questions you might have about the treatment.

If you made it this far, thank you so much for reading and for your support. Any help you can give would be so massively appreciated. We just want to do the best for our child and give him a fighting chance at a normal life.

Thank you.

Simon and Sophie Willis x