Mum heartbroken after ‘perfect’ daughter, 5, diagnosed with terminal brain cancer she thought was food allergy
THE mum of a five-year-old girl diagnosed with a terminal brain tumour initially thought she had a food allergy before receiving the devastating news. Sarah Smith, from Dublin, told how alarm bells rang when she noticed that her bubbly daughter Lucy was a lot more tired than usual. After initially thinking a food intolerance was […]
THE mum of a five-year-old girl diagnosed with a terminal brain tumour initially thought she had a food allergy before receiving the devastating news.
Sarah Smith, from Dublin, told how alarm bells rang when she noticed that her bubbly daughter Lucy was a lot more tired than usual.
After initially thinking a food intolerance was causing the change in Lucy’s mood, the mum-of-six told how she was stunned when the doctors later revealed she had a rare and aggressive brain tumour called DIPG, or diffuse intrinsic pontine glioma.
The family were told Lucy had just six to nine months to live by doctors and that any treatments offered would only be palliative options.
Speaking about Lucy’s first symptoms, Sarah said: “We live in an avenue where there are loads of kids, everybody’s out playing.
“I just noticed Lucy wasn’t really involved and she was more tired than usual.”
Sarah said this didn’t really set off alarm bells as such but it did worry her.
She explained: “I made the appointment to try our local GP who told me that it could be the heat, and that she probably wasn’t able for it.
“She told me watch what she was eating because she did vomit a few times.
“I was thinking it was maybe reflux or some sort of food allergy.”
Sarah said Lucy seemed to get better but was left heartbroken when she collapsed before a planned family outing to Dublin Zoo.
The mum-of-six recalled: “Lucy was kind of back to herself, everything was okay.
“On the morning we were due to go the zoo, Lucy didn’t look herself at all, her whole complexion changed.
“Her eyes rolled to the back of her head and she wet herself.
“As I was bringing her up, she just went limp and that’s when I panicked and shouted at Lucy’s dad Dwayne to get an ambulance.”
The paramedics told Sarah it seemed liked a viral infection.
She continued: “I was honestly going into the hospital expecting to be told she had a viral infection or a food allergy, I never anticipated it to be what it was.”
“It was unbelievable when they told, never did I ever expect to be told it was something so serious.”
The mum said she knew something was wrong when they the doctors wanted to do a CAT scan.
She continued: “They wanted to do all these tests and when they said they were keeping her in and they wanted to do an MRI scan, that’s when my heart started racing and I knew something was wrong.
What is DIPG
Diffuse intrinsic pontine glioma (DIPG) is a brain tumor found in a part of the brain stem called the pons.
The pons controls essential bodily functions such as heartbeat, breathing, swallowing, eye movement, eyesight, and balance.
DIPG almost always only affects children, usually aged between 4 and 11.
As a DIPG tumor begins to grow, it puts pressure on the nerves that control the essential bodily functions regulated by the pons.
Children with DIPG commonly experience double vision, reduced eye movement, facial weakness or asymmetry, and arm and leg weakness.
They also have problems with walking, coordination, speech, chewing, and swallowing.
“Dwayne came in the next morning and we went and spoke to the doctor and that’s when we were told.”
After learning that Lucy had an aggressive form of cancer, the youngster underwent emergency surgery to relieve the pressure on her brain and a shunt was inserted to drain the fluid.
The family brought Lucy home and have placed her on a strict plant-based diet and Sarah vowed the family would fight it together.
Sarah said: “Since she’s been home, she’s back to herself, she’s doing so well.
“She’s my Lucy and I don’t want to change that, that’s why we turned down the radiotherapy.
“We’re treating it naturally.”
Sarah said: “Lucy is literally just the perfect daughter, she is the perfect child, she is so caring for her age, anybody that knows Lucy will know her charm.
“She cares about other people’s feelings and she’s only five.”
The family, who have set up a GoFundMe page, has raised more than €20,000 so far and the money will be used for Lucy’s supplements and new diet along as alleviating the financial pressure on the family.
Lucy’s dad Dwayne has had to leave his work to help care for her, along with her siblings Conor, Abbie, Carter, Jacob and baby Theo.
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Sarah said: “I’m so overwhelmed to the reaction of the GoFundMe. I didn’t expect it to blow up like it did. There’s been so much support.
“I don’t know to thank everyone like my word is just powerless
“It’s so much to take in but I’m so grateful, I’m so grateful. We’re just from an area where everyone gets behind you and backs you up.”