"My daughter was diagnosed with rare tumour - after falling while learning to walk" - video Dailymotion

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Five-year-old Nicola Francis has undergone 20 operations after being diagnosed with a rare and aggressive giant cell tumour.  Her mother, Iveta Kosova, sought medical help after Nicola's jaw kept swelling following a fall.  A biopsy at Northampton Hospital confirmed the condition, leading to treatment at Great Ormond Street Hospital.  Now, the family remains in limbo, unsure which treatment will be effective.

Transcript

00:00My name is Iveta and I'm mom of Natasha and Nikola.

00:09We moved here, I think when she was six months old we moved here and she started to walk

00:15and learn.

00:16When Nikola was nine months old, I think 2020, she fell, I can't remember exactly where,

00:23but she hit her face, it swell up, nothing major, but you could see it's a bit swollen,

00:29so I contacted the GP, they said wait for seven days and it will go down, and the half

00:36of her face went down, but the other half didn't go down, it just kept swelling and

00:41swelling, so it was always back and forth, GP, dentist, and it was during the COVID as

00:47well, so you couldn't just freely go anywhere.

00:52And by the time something actually, somebody helped, it just kept swelling, swelling, so

00:59I think it took one month until actually somebody saw us properly and they just referred

01:05us to do an operation in Northampton, so then when they operated the tooth out, I think

01:12they thought it's, obviously would think it's a tooth, or extra tooth, or I don't know,

01:18so they operated that out and it still kept swelling, it still kept growing, so by the

01:25time they knew it can't be the tooth, it's something else going on there, so they done

01:29the biopsy and they found it's a tumour, straight away referred us to Greater Monastery Hospital,

01:35but the worst thing was when they said they don't know what to do with it because they

01:39never heard of it, they never seen it on nine months old babies, so they don't have treatment

01:45for it, so that I just couldn't anymore.

01:47Now we are five years in and still there is no treatment, still we just have to keep operating

01:54all the time, nobody believe it's something wrong with her when you look at her as well

01:58in school, she's always happy, you know, and she doesn't know any better to be honest,

02:04because she knows a bit, nine months old is too little, you know, that's all she knows,

02:10hospitals and you know, tests and operations.

02:15You have good days and bad days, and then you have worse days, so that's how it goes.

02:23We didn't want to accept the diagnosis and it's sort of you live in a limbo, if you don't

02:30talk about it, it's not real, so we didn't really want to put it out there.

02:35Lately I started to accept it now more, with the help of school and that's how it came

02:43to this, with the help of Nicola's school, they wanted to do a little fundraiser, a little

02:51to cheer her up, since you do feel a bit lighter on your conscience that, you know, you're

02:58doing something for her, something more than just, you know, take care of her, cooking,

03:05cleaning and all this.

03:07So she's five years old now and obviously we appreciate all the help, which again I

03:14didn't expect, and I know times are tough and you know, the money obviously is just

03:20there to make her happy, whatever she wants, you know, get her to the hospital, as I say

03:25we always, when we're leaving the hospital we have the tradition we take her to a toy

03:30shop and she picks always a teddy from a toy shop, just little things like that make her happy.

"My daughter was diagnosed with rare tumour - after falling while learning to walk"

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