Together for Zoë: Help Us Fund Life-Extending Treatment

Hi everyone,

Our world was shattered in March 2023 when my incredible wife, Zoë, received a diagnosis of PEComa, an exceptionally rare and aggressive cancer. At the time we were expecting our first child, Penelope. What should have been a time of pure happiness has been overshadowed by this devastating illness, but we are determined to fight for Zoë’s life.

Zoë’s journey began with what she thought was a pulled muscle in her right leg. The lump in her thigh was sadly not this, and following an ultrasound and MRI in February 2023, the words “suspected sarcoma” and “cancer” were being used. The news was earth-shattering, especially with Zoë being 16 weeks pregnant.

We were very fortunate to be connected with the Sarcoma clinic at Bournemouth Hospital and then the amazing team at The Royal Marsden in London who between them performed a biopsy and pathology. After 3 long months of waiting for investigations, it was finally confirmed Zoë had an ultra-rare PEComa. At this point, no further scans could be done due to risks to our daughter.

In May 2023, Zoë underwent major surgery at The Royal Marsden while pregnant, successfully removing a 20cm tumour from her thigh. The care she received was truly outstanding.

Our beautiful daughter, Penelope, arrived in July 2023, bringing us immense joy amidst the ongoing challenges. However, our happiness was short-lived. A later PET scan revealed the cancer had already spread to Zoë’s lungs and bones (hip, neck and lower back). Tragically, there were also new tumours already growing in her right leg (where the primary tumour was removed). The cancer was now stage 4 and there was no cure. Her prognosis was that she'd have between 6 months and 2 years to live.

Since then, Zoë has shown incredible strength, enduring 4 rounds of radiotherapy, a hip replacement surgery and hormone treatment. However, due to the rarity of PEComa and her unique genetic profile, NHS treatment options are now very limited.

This is where we desperately need your help. Through the incredible PEComa community and the excellent Sarcoma team at Southampton Hospital, we’ve discovered targeted drugs that have shown great promise for others with Zoë’s specific genetic makeup. While some are approved for other cancers on the NHS, they are considered “experimental” for PEComa, meaning we need to fund them privately (we are looking at thousands of pounds every month). We have already been turned down for one compassionate access request and are exploring others but sadly there's no guarantee.

This initial fundraising target is aimed at covering up to a year's worth of this targeted treatment (plus other expenses and experiences), though exact costs can fluctuate. However, we anticipate that we will likely need to increase this initial target to cover further rounds of drugs, other essential expenses and potentially more expensive treatments down the line, such as immunotherapy, which can run into many thousands of pounds. With such a rare cancer, we are venturing into the unknown, and our biggest hope is that the longer Zoë can stay alive, the more likely it will be that further innovative treatments and clinical trials could become available to her.

The financial burden of fighting this relentless disease is immense. Beyond the cost of the targeted drugs, we also face:

Zoë is so much more than her diagnosis. She is the most loving, kind-hearted, and selfless person I know. Even before her diagnosis, Zoë was always the first to offer help to anyone in need. Whether it was supporting friends through tough times, volunteering in the community or simply offering a listening ear, Zoë’s generosity and compassion have touched so many lives. Now, it’s our turn to rally around her.

Whilst we appreciate financial times are hard for everyone and understand not everyone will be in a position to be able to donate directly, we would welcome anyone that wants to partake in fundraising activities, raise awareness, share through socials, and any other support people can offer.

Whilst advanced metastatic PEComa isn't curable, it is treatable. Living with cancer isn't linear and there are many ups and downs. One week Zoë could be working at her job, pottering in the garden, playing with Penelope…but the next week could be spent in bed, in pain, recovering from a surgery or dealing with treatment side effects. We believe that these targeted drugs offer Zoë the best chance to live longer and spend more precious time with Penelope and me. The hope is the treatments will shrink and control cancer growth so she has the best quality of life. Every day with Zoë is a gift, and we are determined to fight for as many more as possible.

We are reaching out to you with hope in our hearts. Any contribution, no matter the size, will make a tangible difference to Zoë’s life. Your generosity will directly fund her treatment, alleviate the financial pressures we face, and allow us to focus on what truly matters: making memories together.

Please donate today and share our story. We will keep you updated on her progress and are eternally grateful for your love, support, and kindness.

With heartfelt thanks,

Rob, Zoë, and our precious Penelope x

P.S. We will be adding to this this page regularly to keep everyone up to date.