Her mum, Naoko, is determined that life will not be any different just because Ellie has Down Syndrome. And on World Down Syndrome Awareness Day, she wants to spread a positive message and break down misconceptions about the condition. 

Now in Year Two at Amherst School, Ellie is thriving. She has already come through great adversity in her short life, though Down Syndrome has not been the primary cause.  

Ellie was diagnosed at six months old. Naoko had suspicions that her daughter may have Down Syndrome, but it was not until she saw a sixth GP that she was believed. 

Pictured: Naoko Mauger, with Ellie as a baby. 

“At times I thought I was going crazy. I wasn’t being believed. Maybe she looked the way she did because Ellie was a half-Asian, half-Caucasian baby. I was worried, not that she might have Down Syndrome but that there may be other issues that could need urgent treatment.” 

The sixth doctor she saw took a blood test, and a week later Ellie was diagnosed as having Down Syndrome. 

Just a week later came the bombshell that turned their lives upside down – Ellie was diagnosed with leukaemia, which needed six months of treatment. 

“The Down Syndrome diagnosis shocked me, but it was a relief as I knew something was wrong. However, I was really angry when we found out that she also had leukaemia; maybe that could have been picked up by the five GPs who didn’t test her,” said Naoko. 

"It was like someone just shot me in my heart"

“To find out she had leukaemia, that was like someone just shot me in my heart. I felt so much guilt. Ellie had so much straight black hair when she was born, and she lost all her hair with the leukaemia treatment. It was heart-breaking.” 

Naoko and Ellie spent six months in Southampton, as Ellie had four courses of chemotherapy.  

“Guernsey was already a foreign country for me, and now I had to go and stay in Southampton while Ellie had her treatment. We were in Southampton on the Children’s Oncology ward. We had an amazing relationship with all the staff there. They are amazing doctors and nurses – very emotionally supportive. The ward was always full of laughter. 

“Ellie was adored on the ward. She was a very happy, jolly baby and the nurses loved looking after her. We never felt alone during treatment, and Ellie was amazing. She has never felt sad about her life.” 

Ellie made a close friend there, who was also going through chemotherapy, but heartbreakingly her friend Isabel died when she was only a year old. 

Thankfully, Ellie finished her treatment when she was a year old, and three years after treatment she completed her period of remission. 

Pictured: The Mauger family: Jo, Naoko, and sisters Ellie and Alyssa.

Back in Guernsey, Ellie joined La Petite École Nursery, and Naoko said that was another hugely positive step for her. 

“The nursery was very enthusiastic about learning about Down Syndrome and they have a really good understanding about the condition.” 

Ellie’s younger sister now goes to that same nursery, which Mrs Mauger compliments as “a really warm environment”. 

After nursery, there was never a doubt in Naoko’s mind that Ellie should attend mainstream school. 

“I grew up in an inclusive primary school. The teacher was very passionate about human rights and equality and would openly discuss special needs. In our class there was a pupil with cerebral palsy. All children are going to be adults one day, in a community with diversity, so it’s better for them to be able to understand from a very early age.  

“We want Ellie to study with her peers. She is very independent and only needs some slight supervision at times. All children with special needs have a right to education.” 

Ellie went into Reception at Amherst School, and again Mrs Mauger compliments the teaching and support staff there.  

“Ellie loves the school and her teachers, especially her Year Two teachers Mrs Humphrey and Mrs Gardner.” 

"All children with special needs have a right to education”

She says that Ellie has many friends in school, not only in Year Two, but also younger and older pupils.  

“I knew it was going to be a challenge, but a lot of parents try to find the best school for their child and the data I found indicated that there could be as much as two academic years difference between a child who has been through mainstream school rather than a special school. 

“And there was no evidence that a child with Down Syndrome could not attend mainstream school. People with Down Syndrome are just like other people in society; some can do things, some can’t. All children with Down Syndrome develop differently; they are individuals. 

“Ellie loves maths, phonics and reading – she'll pick up a book and read by herself. She loves the Julia Donaldson books and will read Room On The Broom and The Gruffalo to her little sister, Alyssa. That’s something I didn’t imagine would happen, but it’s wonderful to see them together.” 

Pictured: Ellie dresses up as the witch from one of her favourite books - Room On The Broom.

Mrs Mauger and her husband, Jo, met in Japan and regularly chat in Japanese. She says that Ellie and her sister are likely to grow up bilingual. 

“When Ellie was younger, we would speak to her in a mixture of English and Japanese. When she was about two years old, she realised that I was speaking another language, something different from what everybody else was speaking, and she seemed reluctant to speak it. 

“Now Alyssa has turned two and she is picking up Japanese and so Ellie has started speaking it again. They practise the alphabet and use flash cards together. 

“She is the best sister ever. They are best friends and Ellie is so proud to have a little sister. No way is having a child with Down Syndrome a negative. Our case is full of positivity – we are really feeling grateful for everything. 

Naoko and Jo have both contributed to a collection of poems written by family, friends and carers of people with Down Syndrome. This can be found HERE and HERE.