Hi our names are Chelsea & Andy and we have created this GoFundMe to support our close family friends Sharna & Jon during an incredibly difficult time and to help them focus on what matters most: being by Arabella's side throughout her treatment and recovery. Arabella is a brave little girl facing an incredibly rare and complex tumour affecting her jaw and airway.

Arabella was first admitted to hospital in January, where the family stayed at University Hospital Coventry for five nights. They were sent home with a diagnosis of necrotising lymphadenitis and a course of antibiotics, which Arabella spent several weeks taking. However, her parents soon became increasingly concerned as the area of concern was not improving and was in fact getting worse.

Following further investigations, including an X-ray of her mouth at University Hospital Coventry, doctors identified an abnormality which led to another three-night stay in hospital. The family were then referred to Birmingham Children’s Hospital, where Arabella underwent an emergency CT scan followed by an MRI under sedation.

It was during these investigations that Arabella’s family received the devastating news that she had a rare benign tumour called desmoid fibromatosis.

A desmoid tumour is a rare type of tumour that does not spread to other parts of the body, but it can grow aggressively into surrounding tissues, muscles and structures. Although it is classed as benign, it can still cause serious complications depending on its size and location. In Arabella’s case, the tumour is affecting her jaw and mouth, making her condition particularly rare and extremely complex.

Following a biopsy, the tumour caused significant swelling and blocked Arabella’s airway, resulting in a week-long stay in intensive care under sedation.

Due to the size and location of the tumour, surgeons have been unable to operate safely and instead made the difficult decision to begin chemotherapy in the hope of shrinking the tumour before surgery can be considered.

Arabella first started chemotherapy in mid-March. However, her treatment has been interrupted on several occasions due to complications and setbacks, including infections, breathing difficulties and the need for additional procedures. Despite these challenges, she has now completed six consecutive weeks of chemotherapy while remaining under the care of Birmingham Children’s Hospital.

Throughout this time, doctors have continued to monitor her condition closely while assessing how the tumour responds to treatment and determining the safest path forward.

One of the complications Arabella faced caused her airway to become blocked once again, requiring emergency surgery and the placement of a tracheostomy.

A tracheostomy is a surgical opening created in the front of the neck that allows a breathing tube to be inserted directly into the windpipe. This enables a person to breathe safely when their normal airway is blocked or at risk of becoming blocked. Arabella now relies on this to help keep her airway safe while doctors continue to treat and monitor her condition.

The family are currently living at Birmingham Children’s Hospital and have been since the beginning of April, with no clear indication of when they will be able to return home. To make an already incredibly difficult period even harder, Sharna, Arabella’s mum, is currently 36 weeks pregnant and facing the uncertainty of what lies ahead while preparing to welcome a new baby.

Sharna has had to begin her maternity leave early to care for Arabella, whilst Jon, who is self-employed, has significantly reduced his work commitments and is preparing to stop work altogether as the family navigate what comes next.

Arabella now requires 24-hour care while doctors continue to monitor the tumour, which remains too dangerous to operate on safely. Due to the rarity and complexity of her condition, Arabella has been classed as a critically complex case and will contribute to further research to help doctors better understand and treat this type of tumour in the future.

This week, Arabella again experienced breathing difficulties and required further emergency surgery. During the procedure, doctors identified another area of concern and took additional biopsies for investigation. As desmoid tumours do not typically spread, this has raised further questions for her medical team.

More frequent MRI and CT scans are now being carried out as doctors continue to monitor the tumour and assess the safest treatment options available to her.

For the time being, she will require regular procedures to help keep her airway safe while doctors continue working towards the most effective treatment plan for her condition.

The medical team have explained that a case this complex is extremely rare. Doctors continue to explore all available treatment options while carefully monitoring Arabella’s condition and working towards the best possible outcome for her. While there is hope that further treatments may become available, the road ahead remains uncertain and is likely to be a long journey for Arabella and her family.

Alongside chemotherapy, Arabella has faced numerous infections and is now adjusting to life with a tracheostomy and breathing tube. She also currently relies on a feeding tube, meaning her parents are being trained to manage all aspects of her care.

Arabella is also awaiting surgery to have a PEG (Percutaneous Endoscopic Gastrostomy) feeding tube placed directly into her stomach. At present, she receives nutrition through a tube in her nose, but as doctors do not yet know how long she will require feeding support, a PEG tube will provide a safer long-term solution.

Despite everything she has endured, Arabella remains the bravest little girl. She has shown incredible strength throughout every challenge she has faced and continues to greet each day with a smile.

She should be looking forward to starting school in September and preparing for her exciting new role as a big sister. Instead, she and her family are facing challenges that no child or parent should ever have to endure.

We are setting up this fundraiser to help relieve some of the financial pressure on the family during this unimaginably difficult time. With their new baby due to arrive in the coming weeks, ongoing hospital stays, and Jon needing to take an unknown amount of time away from work to support his family, the emotional and financial strain has become overwhelming.

Any donation, no matter how small, will help ease some of that burden and allow the family to focus on what matters most: caring for Arabella and spending precious time together.

The family would also like to make it clear that any funds not required during this difficult period will be donated to desmoid tumour research and related charities. They are committed to supporting further research and fundraising efforts in the hope that one day fewer families will have to face the challenges they are currently living through.

Thank you for taking the time to read Arabella’s story and for any support you are able to give.