Mother tells story of four week old son being diagnosed with a brain tumour

Irish charity Brain Tumour Ireland (BTI) is calling on people in Leitrim to don their favourite hat in support of its annual awareness and fundraising campaign #WearAHatDay on Friday, 23rd October 2020.

The annual campaign raises funds for the charity’s vital support and information services for people diagnosed with brain tumours and their families in Leitrim and all over Ireland, as well as raising awareness of the need for such services. A €4 donation can be made by simply texting BTI to 50300.

Paediatric Brain Tumour Support

#WearAHatDay takes place each year as part of Brain Tumour Awareness Week, which will run from Monday, 19th to Friday, 23rd October. This year, the awareness raising campaign will shine a light on paediatric brain tumours, and the impact that such a condition has on children and their families. There are approximately 60 children diagnosed with a brain tumour each year in Ireland.

As part of the Brain Tumour Awareness Week campaign, Brain Tumour Ireland will launch a new section of its website dedicated to providing information and resources for families of children living with brain tumours, and a place to hear and share experiences of and with other families experiencing the same diagnosis and challenges.

Across all age ranges, over 400 people are diagnosed with a brain tumour in Ireland each year with many contacting Brain Tumour Ireland for support when they receive their diagnosis. As well as the practical supports and information, Brain Tumour Ireland also raises awareness of brain tumours and their symptoms among the public and the medical professions and contributes funding to brain tumour research initiatives.

This year, Brain Tumour Ireland has partnered with milliner Michelle Treacy, who is donating a bespoke hat as a prize for the ‘Best Selfie’ posted with the hashtag ‘#WearAHatDay’.

Natasha Smith, Chairperson of Brain Tumour Ireland said, “We’re calling on the people of Leitrim to get involved on Friday, 23rd October to support the work that Brain Tumour Ireland does - by simply wearing their favourite hat on the day and donating €4 by texting BTI to 50300. 

“We receive no State funding so our #WearAHatDay campaign is essential in funding our services year-round. A brain tumour diagnosis can have a devastating impact on patients and their families, particularly in the case of paediatric brain tumours. We’re hoping that the public in Leitrim, and across the country will show their support for people diagnosed with brain tumours and have a little fun by getting involved in this campaign. We can’t wait to see the creative hats and photos shared on the 23rd October.”

#WearAHatDay is taking place as part of Brain Tumour Awareness Week which runs from 19th – 23rd October 2020.

For further information, please visit: https://braintumourireland. com/news/brain-tumour- awareness-week/

How to Donate - Donate €4 by texting BTI to 50300.

A minimum of €3.25 will go to Brain Tumour Ireland as some operators apply VAT. 100% of each donation goes to Brain Tumour Ireland across most network operators. 

A personal story - Andrea Smith, mother of Jake (Age 5)

At four weeks old, Jake Smith's mother Andrea went to see a GP as she had noticed a lump on the infant’s head. That day, Jake was referred to Cavan General Hospital. A scan revealed a large mass on Jake’s brain, and he was taken by ambulance to Temple Street Children’s hospital immediately.

A day later, on Christmas Eve, he was sent for an emergency MRI scan and Jake was diagnosed with a Grade 4 brain tumour and was scheduled for surgery early in the New Year.

Jake's parents Andrea and Padraic took him home to spend the Christmas holidays with his two older siblings and family but unfortunately he got very sick over the holidays and they quickly had him baptised on St. Stephen’s Day and rushed him back to Temple Street.

He was operated on and a large tumour approximately the size of a mans closed fist was removed on 29th December. Jake and his parents spent a month in a high dependency ward in Temple Street. On one occasion he stopped breathing. CPR was performed on Jake and he was rushed to the ICU.

During that time, Andrea and Padraic missed out on celebrating Jakes’ brother’s 5th birthday as Jake was too sick and his parents could not return home. When Jake was discharged from Temple Street, he got to spend just 10 days at home with his siblings, after which he was transferred to Crumlin Children’s Hospital where he spent nine months almost full time in hospital on intensive chemotherapy treatment.

Jake took an allergic reaction to one of his chemotherapy medications and it damaged the muscles in his throat which required another stay in ICU. Jake was fitted with a feeding tube and was not allowed to take any food or liquids by mouth for more than six months so as to allow the muscles to recover and heal. During Jake’s time in hospital and ICU he forgot how to drink and swallow, and now suffers with severe oral aversion. 

Jake's tumour grew back, and he was operated on again in January 2016 but surgeons were only able to remove a portion of the tumour. He was put on oral chemotherapy but unfortunately this was unsuccessful, and the tumour continued to grow. 

In 2017 he was given a new trial medication, the first child in the world to do so. Jake continues to take this medication. Jake’s tumour has now stabilised and has shown little to no growth. 

Now five-years-old, through his work with speech and language therapists, Jake is learning to take sips of water. Doctors had told Andrea and Padraic that their son may never be able to walk, but he has learned to do so and loves to play with his siblings in the garden, climbing and playing on his swing set.  Andrea says that he is “a joy to have in the house.”

Throughout Jake’s treatment, both Andrea and Padraic have had to give up work to care for their son, who required around the clock supervision while on chemotherapy.

Andrea says that Jake and his siblings, who were six and four years old when Jake was born, do not remember a time when there were not health and safety procedures in place or even a ‘normal life’.