Jasmine's Story: A Journey of Resilience and Hope

Jasmine was a perfectly healthy, active, and independent child until two months before her 4th birthday when she was diagnosed with a rare and aggressive cancerous brain tumour. This marked the beginning of an unimaginably challenging journey.

Her first surgery resulted in an Acquired Brain Injury (ABI) called Posterior Fossa Syndrome (PFS), which significantly affected her speech, coordination, and ability to control voluntary movements. Despite these challenges, Jasmine showed incredible determination and progress with physiotherapy, which has made a massive positive impact on her movements.

Now, three years after her diagnosis, Jasmine is preparing for her 19th complex surgery: a Syringopleural shunt to address a Syrinx (a dangerous build-up of fluid in her spinal cord). Previous treatments were unsuccessful, and this surgery is her last hope to prevent further loss of limb function.

On 31 October 2023, an attempt to reduce the Syrinx resulted in Bulbar Palsy, severely impairing her cranial nerves. This affects her ability to swallow, speak, and manage secretions like saliva. We produce 1.5–2 litres of secretions daily but Jasmine has no ability to swallow them. This places her at constant risk of aspiration, requiring trained medical care 24/7 to clear her airway and prevent her from choking.

At night, the risks escalate. Jasmine cannot manage her secretions while asleep, and her condition causes airway obstructions that require urgent intervention. She must sleep upright, but due to left-sided weakness and spinal curvature, she needs frequent repositioning. Vomiting, a constant challenge since her diagnosis, complicates matters further. Jasmine vomits multiple times a day, every day, due to her surgeries and her brain’s damaged nerve centre for nausea. Vomiting triggers extreme emotional distress for her and poses a severe aspiration risk.

This year alone, she has aspirated on vomit twice, requiring induced comas and ICU stays to save her life. Since November 2023, Jasmine has also experienced intermittent internal bleeding in her stomach, causing intense pain and blackened vomit. These episodes require additional hospitalisations and create ongoing emotional and financial strain for our family.

Despite her challenges, Jasmine remembers her life before cancer. She longs to eat, play, and walk again like other children her age. Her last meal was on 30 October 2023, in the hospital—a simple jacket potato with beans. Every day, she asks when she will be able to eat or walk again, breaking our hearts as we navigate her new reality.

The Importance of Night-time Care

Since July 2024, Jasmine has required agency-provided night carers 7 days a week. This vital care allows her to stay stable and attend her special school, where she’s been able to make new friends after years of isolation. We are grateful to this night time care as we have just celebrated Christmas together as a family after being separated due to hospital stays for the past 3 Christmas holiday periods.

Before night carers, Jasmine’s care was solely our responsibility. From January to June 2024, the lack of night-time support led to 15 rounds of antibiotics due to airway infections. Jasmine’s condition requires constant vigilance, as bilateral vocal cord palsy means secretions continually trickle into her lungs, causing repeated infections. Jasmine requires intervention throughout the night every 20-30 minutes and more when she has an infection.

Unfortunately, local policies and budgets only partially fund her night care. We were left with an additional weekly cost of £352, which is impossible to cover given the overwhelming expenses already associated with Jasmine’s care. When Jasmine is hospitalised, this funding stops entirely, even though her care needs intensify during those times. Even with the best nurses on shift, we are providing that 24/7 support.

The Day-to-Day Challenges

During the day, Jasmine requires extensive support. She has a minimum of 5 medical appointments per week (once it was 25 in a single week). These appointments involve heavy equipment, complex discussions with medical professionals, and coordination of her medications, feeds, and supplies.

Jasmine is fed entirely via a PEG tube and maintaining her weight is a constant struggle since the start. Her feeds are often interrupted due to stomach pain and vomiting, requiring meticulous tracking of her intake and output. Despite countless interventions, her severe, long-term vomiting persists.

Jasmine’s physical and cognitive fatigue exacerbates her challenges. She cannot move independently and relies entirely on others to participate in activities. Watching other children play while she is unable to join breaks her heart and ours.

Our Current Situation

Jasmine’s current medical conditions are extensive, including:

1. WHO Grade 2 Ependymoma (an aggressive brain tumour)

2. Posterior Fossa Syndrome (acquired brain injury with cerebellar dysfunction)

3. Effects of cranial radiotherapy and harsh chemotherapy

4. Cervical thoracic Syrinx (spinal fluid build-up)

5. Bulbar Palsy with nil swallow function since 31 October 2023

6. Severe aspiration risk and chronic respiratory infections

7. Bilateral vocal cord palsy and postural deformities exacerbating airway issues

8. Hydrocephalus, managed with a VP shunt

9. Severe cognitive difficulties, anxiety, and ongoing emotional trauma

We have been told that with proper care, Jasmine can still reach adulthood, but her journey is far from easy. The care she requires is beyond what we can manage alone, both physically and financially.

How You Can Help

We are asking for your support to:

• Cover outstanding care agency arrears and ongoing care costs

• Purchase a HydrOxy Electrolysis machine and fund private acupuncture to help alleviate Jasmine’s pain

• Ensure Jasmine continues to receive the round-the-clock care that keeps her stable

Any contribution, no matter how small, will help us provide the support Jasmine needs to live as comfortably and happily as possible.

Thank you for taking the time to read Jasmine’s story and for any help you can offer.