Empowering Hope: A Brave Fight Against a Rare Disease in a Children’s Hospital

IN THE BEGINNING LIFE WAS UNCERTAIN

Every second week I was getting scanned.

This is, I wouldn’t carry her full-term.

She probably passed away soon after birth.

I’m just drain and not know.

I’m just gonna live sure on a day.

The family- we’re not expecting a lot.

Another opinion saying no point in doing any major surgery here.

That’s all mine- actually gonna believe in her and give her what she deserves when she was so sick and so low.

When she got better, then it’s like she was never zoned.

She bunks in the back.

Megan has always been very determined to recover after each procedure.

It’s less than a year since we first met Megan and her parents.

We were unsure as to whether she would even survive infancy.

This has gone beyond a short-term survival.

MEGAN’S STORY

She’s American, with old OSHA’s, America just with drain and not normal.

I was coming up not knowing why she was going to be like not normal.

She’s gonna live.

She wanted a. that was worse part of not knowing.

Someone says, look, this is gonna happen.

This is gonna happen.

That’s, that’s not the wait.

Let’s go.

You just had you had to deal with the during the Scan and the rehearsal later said the babies had this measure and big four days and nothing to worry about.

Just come back into extreme.

We’ll do more and more detailed scan.

So the doctor was there and the doctor.

I have to go 45 minutes standing.

The doctor said: look the baby, we have a very large cleft and the brain is not forming.

As I said, the brother is very little brain – showing the brain and there’s fluid were shouldn’t be and just a lot of bad news anyway.

I said in late 2009 medical teams expressed concern in relation to the health of Janice’s unborn baby.

The diagnosis looked grim for her development and survival.

We every second we thought we were, I was getting scanned and it was knocking.

I need the brain wasn’t growing at all a lot.

They said I probably wouldn’t wish I wouldn’t carry her full-term and she probably passed away soon after birth.

Mentally, I sports of can engage by Rj’s good days.

You some days I was doing probably couldn’t go to bed some days.

It’s almost surreal at the time.

So I think both off you two and just focus on her at the best we could.

We explained that the baby was gonna have a cleft in.

We showed her pictures from the internet of kids with classes and stuff tangled first off.

Is she’s one that kept myself from day ever gone?

Yeah, or to the months.

What are you givin in?

Bobby blueprint?

She was due in March 2010, was in February and the 11th February I was brought in for a c-section, not knowing what’s gonna happen and just very anxious, very nervous, frightened everything and every emotion during the zones.

Not, not a cylinder in the room, but the doctors are.

After asked us, before I look at you, John, to see her straightaway but over the cleft.

They were telling me that’s the cleft.

Salsa very said: look before I hand over, saying no, look, let her go over, take a picture and then show me for them.

Weight diminished.

She came out.

There is a career over.

Bring a role for us – she’s

Beautiful – no, she was gorgeous woman which was very, very weak, and she’s not a straightaway then, but I saw you, Kappa.

She was, she was an hour old and she got baptized and it just went.

Sanada, or she’s getting stronger and stronger.

So she was left with us for a while in our arms.

But when she says she showed signs that she was getting hungry, said, look, take her to the kneel and warm, put her into the incubator and see how she goes, and we give her we feed or a bottle, our will.

We didn’t think she would feed about and then, but then fed through the tube.

I dunno, I think, anyone in those shoes which is carry on as normal.

So yes, to do even we took a whole

No

And we just treated like we treated Sophie.

There was no public eye for anything.

We just said, look she’s hairy.

No, would to know.

We carry on as best as we can with her and keep things normal.

It’s Christmas morning, Merry Christmas.

Okay, well enough about a moment, daddy I found in the tree.

They’ve returning home after her birth each day was a welcome surprise for Megan’s family when she was so sick and so low.

When she got better, then it’s like she was never zone.

She bumped to the back and Josh’s fully laced and again and used to say, oh my god, like Ho Ho Lo, like hope, sick she gets and where she she recovers so fast.

Then now I never gave up and I said, no, she, she is gonna push off, she will.

With continued uncertainty surrounding her health and only a few weeks old the family received more news.

For the first time there were glimpses of light in their daughter’s future the first time we went up to temperatures in hospital when we met em, Dr Mcclure Lee.

He sat down with us and he just observed Megan.

He’s just looked at her in her buggy and what was written on paper about Megan, and while he’s seen what Megan was like- two different, two different things- my dad was there.

David was there.

I never said, I believe that’s like just stuff.

Someone actually gone ahead bone, believed in her and to know and just give her what she deserves in life.

Non, that was started with him, but him Lois.

When that changed then it was like total change over and brilliant.

A year and a half later, Megan and family were back at Temple Street to meet various members of the multidisciplinary team investigating the next steps in Megan’s journey- the family.

When we saw them first, the family definitely were not expecting a lot.

They were expecting another opinion saying that there really is no point in doing any major surgery here.

She was communicating in her own way and she actually had quite a lively little personality of her own.

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𝑁𝑒𝑡𝑓𝑙𝑖𝑥 ℎ𝑎𝑠 𝑗𝑢𝑠𝑡 𝑑𝑟𝑜𝑝𝑝𝑒𝑑 𝑡ℎ𝑒 𝑐ℎ𝑖𝑙𝑙𝑖𝑛𝑔 𝑡𝑒𝑎𝑠𝑒𝑟 𝑡𝑟𝑎𝑖𝑙𝑒𝑟 𝑓𝑜𝑟 𝑊𝑖𝑛𝑡𝑒𝑟 𝐶ℎ𝑎𝑖𝑛𝑠𝑎𝑤 𝑀𝑎𝑠𝑠𝑎𝑐𝑟𝑒 (2025), 𝑎 𝑓𝑟𝑒𝑠ℎ 𝑎𝑛𝑑 𝑖𝑐𝑦 𝑡𝑎𝑘𝑒 𝑜𝑛 𝑡ℎ𝑒 𝑖𝑛𝑓𝑎𝑚𝑜𝑢𝑠 𝐿𝑒𝑎𝑡ℎ𝑒𝑟𝑓𝑎𝑐𝑒. 𝑇ℎ𝑖𝑠 𝑤𝑖𝑛𝑡𝑒𝑟-𝑡ℎ𝑒𝑚𝑒𝑑 ℎ𝑜𝑟𝑟𝑜𝑟 𝑖𝑛𝑠𝑡𝑎𝑙𝑙𝑚𝑒𝑛𝑡 𝑠𝑒𝑡𝑠…