Larayia-Faith

In June 2020, Larayia-Faith was diagnosed with high-risk, localised, paramengeal embryonal rhabdomyosarcoma, aged one. Her care is led by Southampton Children’s Hospital.

Larayia-Faith underwent one year of frontline treatment including chemotherapy and radiation. This was followed by one year of maintenance chemotherapy. Since the end of treatment, scans have shown no evidence of disease over the last two years.

Larayia-Faith's Story...

Larayia-Faith was weeks away from her second birthday when she was diagnosed with high risk localised paramengeal embryonal rhabdomyosarcoma.
Larayia-Faith was born at 32 weeks and spent four weeks in NICU. She was always such a happy baby. Development was delayed which we just put down to prematurity. While she was learning to stand she would cry like she was in discomfort. Having been through an Ehlers-danlos diagnosis with her siblings we wondered if it could be the same. I contacted the GP. All communication was done via phone or video call unless urgent as it was the beginning of Covid.
For three weeks they hinted it was a urine infection. Larayia-Faith went off her baths which she loved before. By the fourth week she had a little lump in front of her ear.  She was given antibiotics for an infection but after four days there was no sign of improvement and we pushed for a face to face appointment. The GP effectively ruled out cancer, questioned mumps but wasn’t convinced. We were told it was a silva stone and that if it hadn’t resolved by itself to return in July (It was May).
We also decided to visit A and E who were also unsure what was wrong. I explained I had looked it up and mentioned cancer, mumps and silva stone. They followed the doctors theory of silva stone but one doctor was not convinced. After bloods and a scan which didn’t show anything, we were sent home and told to expect a call. An appointment was booked for the following Tuesday with the ENT team.
However, she got worse over the weekend and at the appointment on Tuesday, a decision was taken to blue light us to the HDU at Southampton hospital. It was here we were told that it was a tumour. The next morning Larayia-Faith under went a biopsy and had a Hickman line fitted. She was kept sedated over night and had a lumber puncture and bone marrow the following day before bringing her round.
We were told it was an aggressive cancer that was heading towards her brain. Her right nostril was blocked by the tumour and her airway was also being compromised. She started chemotherapy the next day but in the early hours of the following day she had a respiratory arrest. Thankfully the family next to us hit the emergency button and the nurses worked extremely hard to bring her back to us. Larayia-Faith was incubated, heavily sedated and then had a three week stay in PICU. She was very quickly named miss sassy pants because she would fight through the sedation especially when she heard my voice. A decision was made to put a tracheotomy in because of her airway being so comprised. This caused great anxiety but was truly the best decision, it was strange watching her having to learn to eat and drink again, as well as not being able to hear her laugh or cry.
Larayia-Faith continued to receive high risk chemotherapy with the plan to have six weeks of chemotherapy in London. Unfortunately, her MRI before radiotherapy showed two new tumours which changed her protocol, she now had to go on to intense chemotherapy and was given a less than 30% survival rate. Larayia-Faith always lived up to the sassy pants nickname needing in total four Hickman lines and two PICC lines fitted, one of her lines split during chemotherapy and as the nurse clamped it she got chemotherapy in her eye. She had a gastrostomy fitted, she learnt to talk slightly over her trache and was a little cheeky.
Larayia-Faith received six weeks of radiotherapy in London as well as her chemotherapy. She then had a year of maintenance treatment. Thankfully,
there has been no evidence of disease for the last two years. She has received another other diagnosis of cerebral palsy and global development delay but despite it all she continues to smile and make others smile everyday.

What was your journey with cancer like?

I could use so many words to describe our journey through Larayia-Faith’s cancer journey. Just even hearing it could be cancer, let alone being sat down and told your child has cancer. It’s almost like your mind is on a fast speed with the amount of things that goes through your head. And how your literally at the mercy of this Doctor you don’t even know in front of you, begging them to save your child. It has to be the most terrifying and isolating thing we’ve ever been through.
Larayia-Faith was treated through covid and we weren’t allowed to see family or friends. She had four siblings at the time who were at home without their mum and scared they would never see their sister again. We spent nearly a year going from one hospital to another before being allowed home. Life during and after cancer is never the life you once knew.

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

I would love to see more funding put in to childhood cancer research for devising kinder treatments.
For professionals to stop looking at it as rare.
For GPs to consider cancer rather than ruling it out without doing any testing.
For people to understand it doesn’t just stop when the treatment stops.
For more support for the whole family.

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