At the age of just 7, Lily Jha was diagnosed with a rare and aggressive brain cancer, Diffuse Intrinsic Pontine Glioma (DIPG). Globally, 1 in a million children are affected each year. ‘Lights for Lily’ is a campaign to raise funds so that Lily can access life-prolonging treatment via clinical trials that are only available overseas to ensure that her precious days are as bright as they can be.
Please join us in lighting the path for Lily and DIPG community. Follow her story:
Lily is a joyful daughter and loving sister to 2 year old Mia. At school she is known for her kind nature, her willingness to help others and her emerging skills as “a little mathematician”. She is full of life and imagination, curious about the world and eager to learn more. Lily loves ice cream- she always knows how to persuade you to get her one! A self-confessed chatter-box, her giggles brighten up even the darkest of days.
Life before lockdown was packed with fun activities: performing arts, painting, swimming, time with friends and family. The first symptoms of Lily’s condition were behavioral changes – becoming increasingly irritable and frustrated, we attributed these to boredom due to lockdown. She then became a little clumsy, spilling drinks on several occasions. However, when Lily struggled to walk straight in the park on 24th July, alarm bells went off and we took her straight to the A&E at Royal Victoria Infirmary in Newcastle upon Tyne.
The 25th of July will be forever cemented in our memory as the day our world changed irrevocably. Lily’s MRI scan revealed a rare form of brain cancer called DIPG, one of the most aggressive, difficult-to-treat brain tumours which is the leading cause of brain tumour deaths in children. Growing in the pons area of the brain stem, it develops very quickly, affecting children’s critical life functions such as their mobility, heart rate, breathing and their ability to eat and sleep. Heartbreakingly, at the age of just 7, Lily has been given less than a year to live.
Lily’s behaviour and physical coordination changes couldn’t have come at a worse time as we shared the challenges of parents around the country desperate to understand and get on top of their children’s physical and mental changes during lockdown.
Living through the nightmare day after day, we keep asking, “Is this a dream? Can this be real? Why our Lily?” It brings a lump to our throat every time Lily innocently hums her favourite Matilda song, “When I grow up…”.
As full-time working parents, our guilt is overwhelming- our inability to ‘fix’ the situation and protect our daughter is crushing. We are desperate for more time with her and we are determined that Lily will be ‘more than’ memories. We want to give her the best chance to live her brightest days.
Currently, there is not a single option for a trial in the UK. The only treatment available, palliative radiotherapy, will finish in two weeks. We must take our next step urgently.
We reached out to the DIPG specialists globally and found some promising options in the USA and Switzerland. However, patients who are not residents of these countries are required to provide all funding themselves; as you can imagine this very expensive and therefore cost prohibitive. For example, the trial we are currently exploring in New York starts from $300,000 for the trial alone excluding costs for travel and accommodation. A CAR-T trial in California costs more than double that. We have also contacted the DIPG Centre of Expertise in Zurich, and they are planning to open a couple of trials in the coming months. We are anxiously awaiting more details, and we have been advised the cost in Zurich is also substantial in similar range to ones in US.
For Lily to be eligible for these trials at current stage, she needs to be enrolled within 12-14 weeks of completing her course of Radiotherapy. This means that Lily must begin her trials in December at the very latest to give us the best chance of buying her the precious time she deserves. Like many families, we are facing huge logistical challenges as a result of the Coronavirus pandemic but we are determined to do everything it takes to give Lily the best care possible and we are receiving support to overcome these hurdles with the aim of Lily joining the trial in November.
Lily, a truly global citizen, needs your help to travel a bit further.
We do not want DIPG to be all that Lily’s life is about. She is our little fighter, but more importantly she is just a 7-year-old child. She wants her “normal life” back more than anything- she wants to dance and sing and help the younger students with their maths. She wants to play in the park with her younger sister, Mia. As Lily goes through the treatments and the challenges associated with them, we want to make her days as bright as they can be. We have planned her return to school in September and we would love to make the trip to Disneyland or Legoland while her condition still allows.
Can you help to light up our path ahead? Any donation, large or small, will be gratefully received and be used towards Lily’s medical needs and obtaining the best possible care in order to help extend her life and make memories along this journey.
Fighting DIPG is a dark journey for patients, families, friends as well as scientists and healthcare professionals who are struggling to find a long-term cure with little or no funding. Any money not used by us will be donated to a suitable DIPG charity to raise the much-needed awareness, which could light up a future where children and their families do not have to go through this horrible nightmare. We need your help- keep the light of hope burning for Lily and her family.
Vineet and Jing
Facts about DIPG:
DIPG most commonly strikes kids between 4-11 years of age
It affects approx. 30 children annually in the UK and 300 in the US
The median survival rate from diagnosis is 9 months
DIPG leaves kids mentally intact but steals essential bodily functions over time such as vision, swallowing, walking and breathing.
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