Girl born with tumour 75% of her total bodyweight ‘wears mask’ to hide pain

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The 3kg growth, known as a sacrococcygeal teratoma, developed when Maria Tanasa was still in the womb and was removed during a 12-hour operation when the tot was just two days old. The procedure was successful but the tiny tot suffered a cardiac failure in the following days at Great Ormond Street Hospital in London.

Despite defying death and struggling with a number of impairments in the five years since – including loss of hearing and coordination problems – mum Ionela says her daughter faces her daily battles with a smile.

Ionela, who lives in Finchley, north London, told Sunday Mirror: “My husband and I are trying to offer the best for our daughter and to keep her happy. She is more or less aware of her problems now but she always tries to smile.

“Her teachers are so amazed at how a little child can wear a mask like this, and keep happy with everything going on.”

But Ionela, 38, and husband Florin, 40, are ” very concerned” for Maria, who couldn’t stand unaided until she was 18 months old and only started walking unaided when she was around three and a half years old.

It was the biggest trauma of mine and my husband’s lives. I cannot express it into words

Ionela Tanasa

She was diagnosed with Auditory Neuropathy Spectrum Disorder (ANSD) and ATAXIA (poor muscle control and disorder that affects coordination, balance and speech) as a baby.

ANSD causes hearing loss as sounds often don’t reach the brain.

It’s caused Maria to have trouble understanding sounds and language, and to have trouble recognising one sound from another. It’s affected her socially and her education.

Ionela has found a clinic in Spain where doctors will be able to insert an implant into Maria’s ear to help sounds reach the brain and improve her quality of life.

But the procedure, another operation, costs £40,000 in total and so the family is currently crowdfunding online.

Ionela, who has no other children, said: “This is going to be so important as it will change Maria’s life.

“It’ll make a huge difference because I want her to be happy, and I don’t want to leave it too late. Her life is suffering already.

“I am concerned for my child, any parent would be. She has had a terrible time during the past years.

“We, as parents, struggle to give her the best. We just want the best for her.”

Maria was born via C-section at 32 weeks at University College London Hospital (UCLH) on December 8, 2016, weighing just 4.022kg.

She was rushed to Great Ormond Street Hospital and, the next day, underwent the gruelling 12-hour surgery to remove the growth.

Photographs of the tumour seen by have been deemed too graphic to publish.

“We were told the surgery was risky and she may not survive,” Ionela, who is a reflexologist, said.

“It was a miracle she did survive. It was a very difficult time, though, as I was at UCLH and she was at Ormond Street.

“It was the biggest trauma of mine and my husband’s lives. I cannot express it in words. You can’t forget it either as it was terrible.

“We will be traumatised for life.”

Maria has battled internal and external problems for her whole life. She needs reconstruction surgery on her buttocks to replace skin lost in the tumour removal.

She has neuropathy in her bladder, also caused by the tumour.

Doctors say the tumour also caused problems with Maria’s vocal cords and throat.

Ionela has found treatment for these other problems too, including a clinic in Romania that can ease Maria’s ATAXIA. These procedures, like the operation to help Maria hear better, are not on the NHS.

The total cost of these is a whopping £80,000.

But Ionela added: “Maria is a cheeky girl. She is funny, beautiful and gorgeous and she is our only child. 

“If you see her, you will never forget her smile. Behind her smile, she is hiding this sad story as she was born with these rare medical conditions. 

“Maria learnt to wear a mask all the time because she feels different from other children and she wants to be like them pretending that she has no problems.”

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