Atherton: 'Absolutely perfect' Heidi diagnosed with brain tumour

Described as an "absolutely perfect" girl, 19-month-old Heidi began showing signs of illness after her head began to tilt and she started to drag her feet across the floor.

Although her mum Megan Spillane and dad Jake Green were concerned that she wasn't her usual self, her symptoms were initially dismissed by their GP as clubfoot and nothing to be worried about.

However, with Heidi's movements becoming increasingly restricted as the days went by, her parents pushed for further assessments and doctors eventually found a tumour located between her brain stem and spinal chord.

After this devastating diagnosis, her family's nightmare worsened when Heidi was transferred to Manchester Children's Hospital as they were informed that the tumour was a diffuse midline glioma, which is a rare, aggressive, and almost inoperable brain tumour.

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Heidi is described as being an absolutely perfect girl from the day she was born (Image: Megan Spillane) Megan, 24, said: "We knew something wasn't right when Heidi started struggling to move her leg, because she was usually a really sturdy walker, and she just wasn't her usual self.

"It all happened in a matter of days but when you hear those words that it's a tumour, it scares the living daylights out of you. It was just awful.

"At first the doctors thought that the tumour could be treated, but we only realised how serious it was after a more in-depth MRI scan."

With doctors pressured into difficult situation, their first call was to perform a biopsy on Heidi to try and remove some of the tumour to determine the best course of treatment.

However, complications arose from this procedure, resulting in the 19-month-old suffering a bleed on the brain, from which she has had to be permanently intubated in intensive care to keep her alive.

Dad Jake with Heidi in hospital (Image: Megan Spillane) The limited options that the family do have, Megan explains, is to apply for a new drug that does not yet have full approval by the NHS, or to treat the tumour by radiotherapy, although this cannot be performed at present due to Heidi's weak condition.

While they plan their next steps and pray for their daughter's recovery, Megan, from Wigan, and Jake, from Atherton, have not left their daughter's side for three weeks.

Their son, five-year-old Bentley, has also been in and out of hospital to visit his sister.

Heidi with her big brother Bentley (Image: Megan Spillane) "We have both been here [at Manchester's Children Hospital] for three weeks, and we would never think about leaving her because she needs us here", Megan added.

"Bentley has been staying with other family and going to school, but he comes to visit us and keeps asking when is Heidi going to get better and when is she going to come home.

"I think he's a bit mesmerised by everything going on but it is hard for him because I think he understands it is serious."

Bentley has been asking when his little sister is coming home (Image: Megan Spillane) With the young parents taking time off work to stay by Heidi's side,  Jake’s auntie Lynsey Boardman has set up a fundraiser to help the family through this tragic time, and support them with whatever they may need going forward.

Highlighting how Heidi's story has struck a chord with many parents, families, and individuals, the fundraiser has already raised more than £5,000.

Megan added: "I was quite against the fundraiser at first, but I changed my mind once I started thinking about the treatments we may need to pay for in the future.

"We don't know what is going to happen yet so we could also use this money to make some memories with Heidi if she is released from hospital, or if the worst comes to worst, pay for the costs we will need afterwards.

"I also wanted to share her story to raise awareness of her symptoms and condition because she has been an absolutely perfect girl since the day she was born, right up until about three or four weeks ago when everything changed."

Megan thanked the community for all the messages and donations the family has received (Image: Megan Spillane) "I also wanted to say a huge thankyou to everyone who have made donations towards our little dolly and to those who haven’t but have taken their time out to read her story and share her around. 

"Thank you from the bottom of our hearts. It means the absolute world to us.

"The support, kindness, and generosity has taken me by surprise and when I see her beautiful little face being shared it brings me to tears to know how loved and supported she is.

"She will get through this, I know she will she is our strong little warrior always has been and always will be. But thank you, she has got this and we have got her every step of the way."

To support Megan, Jake, Bentley, and Heidi, you can donate to the fundraiser set up for the family here. More information about diffuse midline glioma can be found here.