A family is desperately trying to raise £350,000 to help their little girl receive life-prolonging treatment abroad after she was diagnosed with a rare form of brain cancer, giving her less than a year to live.
Lily Jha, seven, from Newcastle upon Tyne suffers with DIPG, or diffuse intrinsic pontine glioma – an incurable type of brain tumour found in an area of the brainstem known as the pons.
Lily has been given less than a year to live, after the only treatment available in the UK – palliative radiotherapy she received on the NHS – is due to end on 21 September.
Lily has lots of friends and is a 'lively' little girl. Credit: Vineet Jha
Her desperate parents now face a race against time to get her enrolled onto a clinical trial – none of which are in the UK. The life-prolonging treatment could give Lily another five years but it must occur within 12 weeks of her course of radiotherapy ending.
With little existing research done on this rare condition, trials are extremely limited, and the eligibility criteria can vary – but it’s most likely that she will need to travel to the US.
NHS doctors say they can do no more for Lily. Credit: Vineet Jha
Her parents and the local community are doing everything within their power to be able to spend more quality time with their daughter, hoping the rest of her tragically short life will be spent making special memories.
In July, Lily’s parents noticed she was struggling with behavioural changes, was becoming clumsier and couldn’t walk in a straight line. They rushed her to A&E at Royal Victoria Infirmary in Newcastle upon Tyne. It was then they got the life-changing diagnosis.
Credit: Vineet Jha
Lily’s dad, Vineet, 39, told LADbible about the moment he found out the diagnosis.
“Why not me? That was the first very first emotion,” he said. “And the second emotion was – no matter how much they try to tell you that it’s not your fault, you ask yourself: ‘what have we done wrong?’.
“So, me and Jing [Lily’s mum] blamed our collective luck. We wondered if it was because we didn’t give her five-a-day?
“It is so hard to accept that and for the first three or four weeks, it was so hard to talk about it and tell family and friends.”
Lily and her dad, Vineet. Credit: Vineet Jha
Vineet described Lily’s ‘vibrant’ personality.
He said: “Lily is very, very lively. She is a very sociable girl, she’s very good at making friends and she is a very good mathematician. She’s a very good older sister to her younger sister Mia, two.
“As soon as she was back to normal, she was chatting all the time, having phone calls with her friends and planning events.
“She is a chatty girl and she’s very humorous. She likes telling stories.”
Lily adores her little sister, Mia. Credit: Vineet Jha
And with that cheeky smile, Lily knows exactly how to wrap her doting dad around her little finger -and how to get a trip to the ice cream parlour after a day at school.
The family say they are are taking every day as it comes. They hope to take her to Disneyland or Legoland – if her condition allows it. And Lily is already planning her birthday celebrations – she turns eight on 23rd September. She’s having a movie night with her friends.
Vineet joked: “She has made a list of friends that are important enough to come to her party. She said that no boys were allowed, but this one boy in question, he convinced her that it would be cool if he was invited, so now he is.”
Credit: Vineet Jha
And her little sister is already being prepped for when she starts school – caring Lily has even made her a secret birthday card for her to open when she turns six.
Vineet said that hitting their fundraising target would give the family a sense of hope for the rest of the time they have with Lily. They also want to raise awareness of this rare illness so that more research can be carried out, with the hope of preventing other families from going through what they have.
He added: “And as a family we want to be able to provide the best experimental treatment for her, to give her the best chance for her to fight this. We want her to have the tools to fight it.
Credit: Vineet Jha
“I think we can only hope for the best. We want to prolong her life and make sure that she can experience as many things in as physically possible.
“She keeps telling me that one of the most important things to her is that she wants to see Mia start school, which is a year from now – so if we can make that happen for her, and make more memories with her, it would mean the world.”
To donate to Lily, just follow the link to her GoFundMe page. To follow her story go to Lights for Lily on Facebook here.
Source link : https://www.ladbible.com/community/daily-ladness-girl-7-given-months-to-live-if-she-cant-get-expensive-life-prolongi-20200917
