Daisy Birikorang

Daisy's Story...

Daisy was born on the 11th of June 2010, a true reflection of a summer baby and coincidently, the start of The 2010 FIFA World Cup in South Africa. She was a happy baby. A smile was always on her face. Curious and inquisitive, she never wanted to sleep as she didn’t want to miss a thing or because she was hungry. Traces she kept throughout her whole life. A healthy, sassy girl with plenty of interests and friends as well as impeccable attendance records and great achievements at school. She loved school, it was one of her happy places, together with Stagecoach performing arts. Daisy made us proud always.

In July 2022, Daisy’s seasonal hay fever took a strange turn, a cough she had, suddenly became more intense and started to sound different, at night she started to make wiz like noises and couldn’t sleep flat. Mum started to take her to see GPs every 2 days for 2 weeks. We went from possible asthma to chest infections diagnosis and 2 changes of antibiotics. By the 27th of July Daisy fainted while on holiday by the pool and started vomiting after few bites of food. We took her to A&E did X-Ray and ECG, nothing was picked up so we left with steroids for 3 days. On the 1st of August after another vomit episode we took her back to A&E. Mum was challenged there on the reason why she was in A&E, the recordings of Daisy sleeping noises and the pictures of her vomits didn’t trigger any urgency. Mum had no intention to leave the hospital without an explanation that day. Eventually, the doctor examined her tummy and picked up something… we were admitted to hospital and the journey escalated from there. Daisy was sick overnight, we were moved to high dependency unit until the morning when Daisy was surrounded by the whole paediatric senior team. We were blue-lighted to Royal Brompton hospital where Daisy received the first lifesaving operation. More than a litre of fluid accumulated around her heart was drained during the operation. Causes were unknown, she was in PICU (paediatric intensive care unit) for 6 days, later a mass was found and we were blue-lighted again to GOSH. Daisy had a femoral line inserted that same evening and was started on emergency chemotherapy until the results of the biopsy came back. PET scans and MRIs followed.

Daisy was diagnosed with Alveolar Rhabdomyosarcoma in the pericardium, she had significant obstruction by blood clots on her jugular vein and was in intensive care for 6 more days before being transferred to the ward. Daisy remained in Hospital until the 22 of August. We were on the journey…every 2 weeks back at GOSH for chemotherapy with occasional stays at our local hospital when a fever spiked. Daisy was also started on blood thinners injections twice a day administered by mum. More operations of different nature followed, Daisy braved them all. She wanted to get better and go back to live her life.

Daisy had just turned 12 when she was diagnosed, she was just starting to blossom as pre-teens do. The therapy changed her looks, her taste, her moods and ultimately matured her personality. By the time she turned 13yo she had endured so much she had the wisdom of a grown up. The choices she made were grown up. With dignity and grace she taught us many lessons and with her unique smile she pushed through every obstacle. She was strong because she didn’t have a choice she wanted to protect her family. She was powered by an immense love. This is the reason why she was also known as Amore.

We never accepted the end. When it arrived we didn’t recognise the signs. Daisy like a butterfly freed herself from the caterpillar body that was no longer fit for her. With her beautiful wings opened wide she completed a metamorphosis we can only imagine as we don’t understand it. We miss her every breath we take.

Remembering Daisy and honouring her legacy is our way to continue the fight against Rhabdomyosarcoma until a cure is found. We are Daisy’s voice fighting for change.

We are the voice of all those children who fought those battles, their voices continue to echo in the broken pieces of all the parents who are grieving the loss of a beloved daughter or son.

This GRIEF is the LOVE they ALL left behind, the LEGACY we will honour fighting the battle against Rhabdomyosarcoma to find a cure. We are the voice of the vulnerable in our society. This is our mission.

Daisy’s Arc logo

We have been inspired by Daisy’s bravery along the journey. The warrior butterfly represents her in many ways. The metamorphosis the caterpillar goes through before its transformation is a change that it must go through. The Butterfly never really sees how beautiful she is and how short her life is. The symbolism of the warrior butterfly has a strong meaning. The ‘W’ on her leg stands for both ‘warrior’ and the ‘W’ shape of the constellation of Cassiopeia where a star we named Daisy Joy is located. The symbols incorporated into the Arc were some of the things Daisy loved as a young teenager. Starting with the music notes and ending with the heart beat or vice versa…..

 

What was your journey with cancer like?

Brutal. The drugs made Daisy very sick. It took a long time to find an anti sickness combination that worked for us. She was often tired and dreaded the fever spikes and visits to hospital. During this time she still went to school when able to do so (and the only child in the borough with cancer to do so) and did remote learning with ESMA. Daisy also attended hospital school at Great Ormond Street during our long stays as she didn’t want to fall behind with her studies. Her English, German, Science and Maths teachers taught her by her bedside. She was investing in getting back to living her life and putting this experience behind her.

Daisy built beautiful relationships with the nurses and doctors; at one point she didn’t want to leave the hospital ward and started to call the nurses her friends. This is the thing, until it touches you, one has no idea of this parallel world that is inhabited by kind and generous souls.

The amount of people we have met during this journey caring for Daisy and for us physically and mentally, supported us and cushioned us in many different ways; it is unbelievable and gives us back faith in humanity.

What changes would you like to see for children diagnosed in the future?

News

Read all the latest fundraising news, charity news and commentary on childhood cancer.

This incredible football fundraiser involving Neive’s community and professional footballers raised £5K.
A team of 105 runners comprising scientists, doctors, surgeons, nurses, pharmacists, families, friends, parents all ran together.
This incredible community event marked Mollie’s five year anniversary of her diagnosis with rhabdomyosarcoma.
An insight into life in the laboratory for Post Doc, Dr Christina Burke.
We are delighted to publish our Annual Report covering FY21/22.
Around the Wash Spiderman themed cycle in memory of Elliott Peto.
This high profile news coverage was showcased on 10th May 2023.
An article focussed on the Cancer Grand Challenge, NexTGen, featuring co-founder, Sara Wakeling.
On the 11th March 2023 families, medical professionals and scientists came together as a community.
The launch took place at a special memorial assembly at Elliott’s school.
We will be opening as a 501(c)(3) in 2023.
Press coverage received in Sunday’s Observer on 15th January 2023.
The sale of gold bath bombs throughout UK Lush stores raises £150K.
Pilot findings published in an article in the Journal of Clinical Oncology.
Our ‘Say My Name’ Season’s Greeting’s card are now available to buy.
Epic cycling challenge for Amber’s Arc raises over £11K.
Telling the stories of the inspirations behind our work is the focus for CCAM 2022
Alice’s Arc referenced in Washington Post news article discussing research in children’s cancers
Lush will be selling a ‘gold’ dragon’s egg bath bomb in support of Dexter’s Arc
An insight into life in the laboratory for Dr Joanna Selfe at the ICR.
The Alice’s Arc annual report covering 1st October 2020 to 30th September 2021.
Alice’s Arc is delighted to be collaborating with CCLG to deliver this research to improve the treatment decision-making process for families.
Delighted to discuss progress on research regarding genetic markers of rhabdomyosarcoma and improving treatment therapies.
They took part in the London West 10kms Tough Mudder in support of Gaspard’s experience with rhabdomyosarcoma.
Sara Wakeling is a patient advocate on the Cancer Grand Challenge, NexTGen.
Delighted to be invited as speakers representing the parental perspective of rhabdomyosarcoma.
Please consider participating in a research interview as part of the REFoRMS (Relapsed and Refractory Rhabdomyosarcoma) study, led by the University of York.
On Tuesday 26th April 2022 this debate was held for the first time with 22 MPs speaking on behalf of constituents.
New research project aims to lead to better outcomes for children with the MYOD1 L122R mutation in fusion negative RMS.
2022 LLHM team of 18 runners raise £16K for research into rhabdomyosarcoma.
On 7th March 2022, we visited Great Ormond Street Hospital, where Alice’s care and treatment for rhabdomyosarcoma was led.
Alice’s Arc had the opportunity to meet the research team undertaking the rhabdomyosarcoma projects invested in and to tour the laboratories
The roles are for a Scientific Project Manager and a Statistician.
This is the first in a series of meet the Alice’s Arc researchers across our research projects.
This new work package will explore the targets identified in RMS model systems with a focus on clinical translation.
We are delighted to appear in the ICR’s latest edition of their twice-yearly Search magazine.
Freddie’s family are inviting you to become part of this special community this Easter and support Alice’s Arc
Will Rutt, aged 20, sadly passed away on Sunday 21st February 2021 after a four year journey with stage 4 ARMS
This project will increase understanding of RAS gene pathways in RMS with a focus on DNA repair and replication stress.
Having being touched by Gaspard’s journey with cancer, a member of staff nominated Alice’s Arc to receive a donation
Assessing The Clinical Value For ct-DNA In Blood To Monitor The Response To Treatments and Identify Disease Recurrence
300 of these candles incorporating Elsa’s very own artwork and name have been sold over the festive season
We are delighted to be supporting five innovative research projects led by several leading cancer research centres
Their daughter, Sophie, was recently diagnosed with rhabdomyosarcoma and her family are fundraising for the charity.
FaR-RMS opened in September 2020 and is now open in ten sites in England and Scotland and several sites across Europe.
On Friday 6th November 2020 Plan.com organised a turn ‘pink’ fundraising day for Alice’s Arc.
Phil and Vicky Macqueen both ran this virtual event in memory of their niece, Jessica Macqueen.
We worked closely with families impacted by cancer to help local communities and businesses ‘go gold’ and fundraise.
The pandemic of Covid-19 has made it mandatory to wear face coverings in certain settings. Why not buy one of ours?
A unique wing walk, in memory of Alice Wakeling and Freddie Carpenter and to go gold for children with cancer
In memory of Elsa McGee, her Dad and other family walked 125 miles over 5 days along the Leeds to Liverpool canal path
Covid-19 inspired Tom to grow his hair and transform himself in to the Tiger King to raise funds for Hope With Gaspard
To mark Faye’s 5th birthday and as a way of giving back since Faye’s cancer diagnosis, her Aunt and Grandad ran 10kms
Please read this edition of our Annual Report to get a snapshot of our activity for the year and our future plans.
Alice’s school choose Alice’s Arc as their charity of the year for the 2019/20 academic school year
Elsa sadly died in April 2020 and her parents want the funds raised to contribute to research in to rhabdomyosarcoma.
Generous support for the charity enabled us to create goody bags for children with cancer receiving chemotherapy at GOSH
Natalie, a trainee psychologist, is the mother of two boys, both diagnosed with cancer within months of one another.
After a 4 year battle, Elsa sadly passed away from embryonal rhabdomyosarcoma on April 14th 2020.
Alice’s school organised a fun run, on Saturday 14th March 2020, in Knole Park for the whole school and their families.
We hosted 85 people at St Julian’s Club, Sevenoaks on Saturday 14th March 2020 at a ‘Go Gold’ casino fundraising event
Sara was delighted to take up the opportunity to attend this reception in celebration of International Woman’s Day
This tells Alice’s cancer story from her point of view and illustrates the mission and progress of Alice’s Arc
The club supported the charity in 2019 and ran several fundraising initiatives including a quiz.
There have been various fundraising initiatives put in place around the firm’s network in memory of Alice Wakeling.
Local schools Walthamstow Hall Junior and New Beacon held Valentine’s fundraising events
Up Up and Away and Alice’s Arc enjoyed visiting the oncology wards with heart balloons, sweet cones and chocolate hearts
Are you feeling lucky? Please join us for a gold casino fundraising evening raising money for Alice’s Arc.
The Edward Gostling Foundation supports people living with long-term illnesses
Jess Macqueen passed away from rhabdomyosarcoma just 5 months after her diagnosis
We are delighted to announce that, the newly formed fund, Hope With Gaspard, will raise funds for Alice’s Arc
Benjamin Ronsseray nominated the charity for this award following his son, Gaspard’s diagnosis with rhabdomyosarcoma.
The EpSSG meeting brings together international professionals devoted to treating children with soft tissue sarcoma
23 parents ran the Watford Autumn 10K in support of Alice’s Arc
Alice’s Arc has fulfilled it’s initial three year pledge to the ICR and given the team a further £69K for research
The school has already raised almost £10K. Latest fundraisers include the sale of the ‘Alice’ bow and a singing event .
8 cyclists rode over 240 miles from London to Paris over three days to raise funds for Alice’s Arc
On the 8th October 2019, Alice Wakeling passed away peacefully, after almost 5 years fighting rhabdomyosarcoma.
The charity had 14 runners participating in this stunning central London Half Marathon.
We have now donated almost £280K to the ICR team since the inception of the relationship in 2016.
This leaflet provides information on who we are, what we do, why we do it and how you can help.
Shane is taking on this challenge in August, cycling from Land’s End to John O’Groats, in memory of his nephew, Freddie.
Olivia Ruhen will work in a Postdoc role on the ICR’s rhabdomyosarcoma research team
Over 100 spectators braved snowy conditions to watch 45 people fire walk to raise funds to help children with cancer
We are delighted to be featured in an article in the ICR’s Spring 2019 edition of their Search magazine
Dunn AC Ltd is helping raise awareness and funds for the charity. They have added the logo to their fleet of vans
Alice’s recent scans show no evidence of cancer. The damage from the AMORE surgery and brachytherapy has healed.
In memory of Freddie Carpenter, Waitrose Rickmansworth, supported the charity with their community green coin scheme.
These funds have enabled the recruitment of a Clinical Research Fellow to add to the team researching rhabdo at the ICR.
The ICR has published a report called ‘From patent to patient – analysing access to innovative cancer drugs
We are delighted to share that the charity has raised over £250K since our inception 2.5 years ago.
It’s a huge tribute to a wonderful 5 year old. Donations to Alice’s Arc at Freddie’s funeral reached over £10K
Alice’s Arc is hosting a fire walk fundraiser in conjunction with the Mayor and local Sevenoaks Council
The ICR team continue to make progress researching rhabdomyosarcoma using the funds raised by Alice’s Arc
Finn’s mother arranged a fantastic event in Leigh-on-Sea, incorporating a quiz, a live auction and a raffle.
Team Cheek went on another colossal walk for the charity raising in excess of £3K
The family fun morning hosted by the school Alice attends raised in excess of £2K for the charity.
Finn, passed away from rhabdo, aged 10 after a courageous 18 month fight with the disease.
Two school girls create fresh lemonade recipe and set up a stall selling it at an event celebrating Armed Forces Day
The charity has received support from various individuals choosing to run and cycle to raise money for the charity
Mike ran the London Marathon in 3 hours and 2 minutes raising almost £4K in support of a family impacted by rhabdo
First Give and Hampstead School joined forces to help children support their community and pitch for their chosen causes
Choose Alice’s Arc when shopping on Amazon Smile UK and 0.5% of the purchase price will be donated to us
Alice is being treated using a relapse chemotherapy regime and a specialist procedure in Amsterdam known as AMORE
This money covers the salary of a Higher Scientific Officer to support the ICR’s rhabdomyosarcoma research.
Alice’s Arc has commented on a letter to President Juncker regarding delays to the reform of EU Paediatric Regulation.
The charity is delighted to have received support from accountants, Kingston Smith and a major US private equity house.
Allen & Overy will make an annual donation to support the mission of Alice’s Arc
We have provided funds to enable an injection of the drug, neulasta for a 3 year old boy suffering from rhabdomyosarcoma
The charity has provided the ICR with funds to acquire laboratory reagents and equipment
Current EU legislation allows Pharmas to use a loophole in EU legislation to avoid trialling cancer drugs in children
Paul raised over £2K shaving his 9 inch hair and beard off and donating it to the little princess charity
Make Believe Sevenoaks invited parents of children in their drama class to join in for a day to raise money for charity
Simon and Sandy Haddock showcased their recent art works at an art evening which raised £1K for Alice’s Arc
Rani completed a 25km walk across 16 London bridges raising £1K for Alice’s Arc.
Accenture nominated Alice’s Arc as one of three charities to donate funds raised from its annual OPSCARS auction
Matt Cheek and Dave Watts walked 100km in 24hours for Matt’s 3 year old nephew who has rhabdomyosarcoma.
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Our Mission

We have already raised £3,500,000 and now aim to reach £5,000,000 to pay for research to find a cure and better treatments for rhabdomyosarcoma.
Raised £3,500,000