Noam’s story

After a complicated birth, Noam was diagnosed with a rare muscular disease. His parents, Willian and Vanina tell us how they were supported by the staff and the Royal Alex and the Rockinghorse funded Reiki sessions.

Noam has a rare condition which mostly affects his chest, facial muscles and swallowing but with support from his parents and his Reiki therapist, Noam is able to relax and reduce his symptoms

Noam with his parents Willian and Vanina

Our little Noam was born after a complicated natural breech delivery at just over 37 weeks. We knew from the beginning, that something wasn’t quite right; he was extremely floppy, had a very weak cry and needed to be tube fed straight from birth. We stayed in the Trevor Mann Baby Unit for a month where Noam had a genetic test and brain scan, both of which came back as normal. Though something was still not quite right they let us go home where we managed to stay for two months until Noam had his first chest infection, in February 2018.

Noam with his therapist Deb Mairesse

He returned to hospital where he stayed until December 2018. I think the most stressful thing for us was that we didn’t know what was wrong with him. Noam was only diagnosed when he was seven months old, about four months after he was admitted into hospital and after two chest infections. It really was a rollercoaster of emotions.

Eventually we were told that Noam has a condition called Nemaline Myopathy, a rare muscular disease that affects his whole body but mainly his chest, swallowing and facial muscles. This means that as he’s can’t cough, any virus or bacteria that gets to his lungs cause severe damage.

During our time at the Royal Alexandra Hospital we were introduced to Reiki by the Rockinghorse crew and the first therapist we met was Debi Mairesse. She is the most gentle and kind human being, always very calm and somehow she manages to pass her calmness on to others.

She and Noam had an almost instant connection. After every Reiki session with her we would notice that Noam’s heart rate had dropped considerably, and he would be so much more chilled it was amazing. Most of the time his breathing would also improve, bringing his oxygen levels up. The other therapist, John, also took good care of us during our time in the hospital.

Little Noam

Sometimes, we would get a session ourselves and that was so important for us, helping us to focus on our little man’s wellbeing. Reiki was essential in helping us be positive and keep our energy levels up. It meant that we could be there for Noam one hundred percent and transmit confidence and belief in him as well as letting him know everything would be fine.

Not knowing the reason that a patient is unwell is very uncomfortable for the doctors and in moments like this they tend to give you the worst news, just to prepare you. I remember feeling devastated after hearing from one of the doctors that some children in the same situation as Noam do not make to two years old. Well, our Noam is about to turn two and he’s has been growing and getting stronger every day. In the eight months we have had Noam back at home with us we have been amazed by his progress; he now sits on his own and talks in his own language and has kept having Reiki sessions at home as we have seen such a benefit from them.

Right from the start of this journey Debi supported us during our time in hospital and truly believed, as we did, in Noam’s ability to progress. Even when his movements were very reduced, she believed he would make it. We will always be so grateful for her support in those difficult moments; I am sure that if we hadn’t had the Rockinghorse Reiki sessions life would have been much harder during our hospital stay.