Mum's bid for daughter to have new life-changing hearing equipment

A mum has made a heartfelt plea to help raise money for life-changing hearing equipment to help her disabled daughter engage at school.

Brooke Phillips, 14, has Posterior Fossa Syndrome [PFS] as a result of complex treatment and surgery to remove a brain tumour.

This affects her co-ordination, vision, hearing, speech and learning.

Brooke, who attends Carlton Digby School in Mapperley, is in a class with eight others with a range of needs and teachers said classroom noise makes it difficult for her “to focus on and engage with learning activities and discussions”.

After talks with specialists last week, she has been given Bluetooth hearing equipment with a microphone to try for two weeks.

Mum Melissa Webster, 32, said: “The difference in Brooke is amazing, she’s so much more confident and can’t stop chatting and is happy being around school.”

Teachers said the difference had been ‘incredible’ but Miss Webster can’t afford the £1,500 to buy the equipment permanently and the school said it did not have the budget.

The equipment, called a Phonak Roger Pen, features a microphone in the shape of a pen which transmits sound to receivers attached to Brooke’s ears.

Miss Webster, 32, who cares for Brooke full-time, said: “How it works is it’s a wireless device that either myself of the teacher will wear around our neck.

“It works via Bluetooth and transmits the voice straight to her [receivers]. It cuts out any background noise and she can hear a lot better with this device.”

Brooke was assessed by specialists at The Ear Foundation, Sherwin Road, who decided the device was right for her on Tuesday, July 3.

Miss Webster, of Gedling, added: “As soon as they switched it on she turned into a different child. She said, ‘I can’t believe I can hear’ – it’s really changed her life.

“She’s able to socialise with her friends and hear everything that goes on and to keep up with her friends.”

Miss Webster explained Brooke had worn hearing aids, provided by the NHS, since 2015.

Although they amplify sound, in noisy environments she said her daughter struggled.

Rachel Eyre, Brooke’s teacher, said: “Brooke has been using a Phonak Roger pen for a week in class and the difference is incredible.

“She is now much more engaged with learning as a result of hearing instructions and teaching. She can talk to her peers and engage in two-way conversations.

“All staff working with her have commented on the difference the hearing device makes and the improved confidence Brooke has shown around school.

“This morning in assembly Brooke was able to hear the information and participate in a quiz, with her friends, at the end to assess her understanding.”

Brooke had surgery to remove all of the tumour at the Queen’s Medical Centre in January 2011 but was left with PSF.

After the surgery she had to learn to speak again and had intensive chemotherapy and radiotherapy for a year afterwards.

Brooke also has a condition called Nystagmus, an involuntary wobbling of her eye which adds to her difficulties.

A spokesman for the Ear Foundation said said: "Sometimes technology beyond hearing aids and implants is necessary to offer the best possible outcomes as in Brooke’s case and this is where we were able to help.

"With the loan of this equipment Melissa can be confident this is the equipment that matches Brooke’s needs. We wish them every success with their fundraising and understand how life changing this equipment would be to Brooke’s quality of life."

Dr Sophie Wilne, consultant paediatric oncologist at Nottingham Children’s Hospital, said: “Posterior fossa syndrome (also known as cerebellar mutism) is a complication that occurs in 20-30 percent of children and young people following resection of a brain tumour from a part of the brain called the cerebellum. It’s onset is 24-72 hours after surgery and the cause is unknown.

“Affected children lose the ability to speak and often develop problems with swallowing and balance.

"Treatment is with intensive rehabilitation by speech and language therapists, physiotherapists and occupational therapists. Children always recover speech but this may be altered in both pitch and fluency. Affected children may be left with long term mobility and cognitive difficulties.

"At Nottingham Children’s Hospital we are undertaking research into the causes of posterior fossa syndrome and ways to reduce the risk of children developing this. We are also very fortunate to have a specialist neuro-rehabilitation team – the BRILL team – that provides the essential, skilled neuro-rehabilitation required for children and young people affected by posterior fossa syndrome.

“Medulloblastoma is a malignant brain tumour that occurs in children and young people. Treatment requires surgery, chemotherapy and radiotherapy and all treatment modalities can lead to hearing loss.

"Brooke is a remarkable young lady who has ongoing neuro-disability following diagnosis and treatment of medulloblastoma in 2011 and who continues to show courage and determination in her recovery.”

Ms Webster said she hoped to work with local charities to help raise the money.

People wishing to help can contact her via email at: melissawebster2505@hotmail.co.uk .