Promoting Uniqueness: Encouraging Narratives of a Self-Assured Girl with an Unusual Appearance

Comm, Nine year old, Trinny Amuhirwe is no different from other girls her age, Except an aggressive bone tumor is threatening to take over her entire face.

Sarah, The tumor started when she was one and a half.

It was just a small thing, but it started growing big.

Comm, The two kilogram tumor is so big that it has blinded Trinny in one eye and made eating almost impossible.

If left untreated, it would have dire consequences for Trinny’s future.

Sarah, It was feeling like she was going to die.

Comm.

Trinny was discovered living in Kampala, Uganda, by Uk charity Facing The World, Graham.

Graham Banton Facing the World

We were contacted in August- Mid-August by a nurse, an American nurse working in Kampala, who’d come across Trinny.

She basically sent us a couple of photos and said that she’d met this girl.

Was there anything that we thought we could do for her?

Trinny has a condition which is called Fibrous Dysplasia.

It’s where normal bone tissue is basically replaced by fibrous bone tissue which just keeps growing, so it destroys the good bone.

The scale of it can vary, and Trinny’s is a very severe case, Graham, I was quite shocked to see Trinny’s condition.

It’s not something you see everyday, Graham.

The place where it’s growing on her skull will impact her ability to breathe and to eat.

That’s why we had to bring her over so quickly for surgery.

Comm Trinny was flown to the Uk by the charity in the hope that surgeons would be able to remove the tumor.

Niall Kirkpatrick Consultant Plastic Craniofacial

Niall, You can see quick, clearly the extent of this benign tumor, which is growing forwards in the face and distorting the bone of the cheek, the upper jaw and actually also between the eyes.

These are rare tumors.

They’re not cancer tumors that are going to kill you in any way, but they’re benign tumors but they have devastating consequences and to see cases that are as extensive as this are extremely rare.

Jonathan, If left untreated, Trinny would face a very bleak future.

Really, There is no doubt the disease will continue to expand.

Comm London is a long way from her home in Uganda and, like any other, nine year old, Trinny was exited to be in a new city, Graham.

I originally thought, as often with the case of our patients is that they are very shy, very downcast.

So I wasn’t expecting the little bundle of energy that she was when she arrived, because you realize that Trinny is just the same as any other little girl and beyond her condition, she is in to the exact same things as other girls are in to Comm.

As the day of her operation arrived, some of the Uk’s leading surgeons who work with the charity were waiting to operate on Trinny.

Jonathan, Trinny’s care involves an enormous number of people.

We’ve got anecdotists, surgeons, theatre staff, computer planners, pediatricians, and they are all giving their time for free, mainly to make Trinny’s operation as successful as possible.

Graham, It’s a massive operation.

It’s gonna take a minimum of about fifteen hours.

The operation that Trinny will be having is a very risky operation and with that there’s very real dangers that she might not survive.

Sarah Trinny has a hope that one time, one day, that thing will come off.

That’s the hope she has.

That’s what she’s waiting for.

I’m also waiting for to see how she’ll look like Comm.

As the surgeons started work to remove the tumor and reconstruct Trinny’s face, they were all acutely aware of the dangers they faced operating on someone with a condition as severe as Trinny’s Niall.

There are a number of things that could go wrong, and death is one of the complications, Comm.

And now, after recovering from a successful surgery, Trinny has her childhood back, No longer held back by the tumor.

She’s able to be the boisterous, cheeky girl she previously was, and she’s able to fulfill a wish to see the sea for the first time.

Train, This service will be fast to Brighton, Trinny.

Yes, Lucy, It’s been wonderful getting to know Trinny and Sarah.

I first met them back in November when they arrived.

From a personal point of view, I’m delighted.

Lucy Wright Facing the World

Actually, She is the most wonderful child and everything she encounters delights her.

She gets very excited about all sorts of things – seeing the sea for the first time, being on the pier and playing on the games.

She just takes it all in.

She’s wonderful

And that makes me happy.

Sarah, When I look at her now, I feel very happy, Comm.

And now Trinny is ready to fly home with Mum Sarah.

Trinny, After my operation, I feel good.

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