The mum of a toddler will never be able to speak noticed a key detail that led to her being diagnosed with a rare disorder.
Nara Colceriu, five, from Edinburgh was diagnosed with Angelman Syndrome when she was three years old after her parents started noticing a delay in her development.
Anamaria Colceriu, 38, fought for a diagnosis for years after noticing “something wasn’t right” immediately after giving birth.
After many failed GP appointments, Anamaria decided to take her daughter to her home country, Romania, for tests. It was then Nara was diagnosed with the rare, neurological disorder.
Anamaria told Edinburgh Live: “My heart dropped when we were told she had Angelman Syndrome.
View 3 ImagesAnamaria and Nara(Image: Supplied / edinburghlive)
“I didn’t believe it. I was in denial. She never inherited the condition from any of us. It just happened.
“She’ll be non-verbal for her whole life and may suffer a lot of seizures.
“She probably won’t be able to read or write and her balance is impacted as well.
“She’s still in nappies, too. I don’t know if that will continue for the rest of her life.
“I knew something wasn’t right when she was born but the doctors were looking at me like I had two heads.”
Angelman Syndrome is a genetic condition impacting the nervous system and causes severe physical and learning disabilities. It occurs in one in 15,000 live births or 500,000 people worldwide.
View 3 ImagesNara still enjoys life and is a happy and bubbly child(Image: Supplied / EdinburghLive)
Nara’s parents started noticing she wasn’t meeting certain milestones when she was around four months old. She was smiling and making eye contact but she wasn’t crawling, and only started walking when she was 17 months.
Her balance was off, too, but doctors kept pushing back, Anamaria said. She took Nara to Romania when she was three where the doctor started ticking off loads of symptoms of Angelman Syndrome, and the penny dropped.
Nara can say certain words including ‘mama’ and ‘dada’ but will never be able to have a conversation.
The mum-of-two went on: “You can’t make Nara talk but she’ll show you exactly what she wants.
“And she understands everything. I speak Romanian to her as well as English.
“I am trying to learn sign language as well. She’s happy in herself. She goes to mainstream nursery and loves it.
“She loves water, bubbles, and dancing. I now know what I need to do and what works best for her.”
Anamaria believes more awareness is needed around the condition as there was scarce support for her family.
She said: “It doesn’t matter what you have, whether it’s autism or ADHD, you should be given more help.”
Nara’s uncle, Ross, is preparing to take on a 10-mile inflatable obstacle course to raise funds for AngelmanUK.
You can donate here.
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