A THREE-YEAR-OLD girl died from a rare form of cancer – after doctors dismissed her symptoms as constipation.
Aoife Flanagan-Gibb was rushed to hospital after her concerned mum noticed a visible tumour on her bottom and she was in agony with pains all over her body.
Aoife’s mum claims docs dismissed her symptoms as common child constipation[/caption]
Doctors dismissed it as common child constipation – however months later she was diagnosed with germ cell cancer and tragically died five days later.
Now Aoife’s mum, Eilish Flanagan, is on a mission to raise awareness of the rare disease while paying tribute to her “warrior princess”.
Devastated Eilish, from Rayleigh in Essex, said: “She was very much a wild child.
“She loved her pony, Bubbles, where the charity gets its name. She absolutely adored Queen Elsa from Frozen, that was her first love.
Aoife died five days after she was diagnosed with germ cell cancer[/caption]
Eilish is setting up a charity that is named after Aoife’s pony, Bubbles[/caption]
“She also loved Paw Patrol, and we’d just been to the cinema to see the movie a week before she was diagnosed and she loved it.
“She was so happy, bubbly and bouncy. And the best word to describe her is kind.”
Eilish first noticed something was wrong when Aoife started to experience pains in her stomach area at the beginning of June this year.
She took Aoife to the hospital countless times but was sent home every time after being told Aoife had common child constipation.
She’d been in and out of hospital with different infections and problems but they kept telling us she had common child constipation
And one medic even suggested that her parents had not been feeding her properly.
Eilish said: “I took her to see the GP or a consultant doctor 11 times in three weeks.
“She’d been in and out of hospital with different infections and problems but they kept telling us she had common child constipation.
“As a mother I knew there was something else wrong. I raised my concerns and she had pains in other areas of her body but the doctors never examined her.
“She had a tumour on her bottom but they failed to investigate it.
“We saw as a family, and we’ve got the support of doctors at Great Ormond Street Hospital, that the doctors should never have missed what was wrong with her.”
What is germ cell cancer?
Germ cell tumours can appear at any age.
They develop from cells that produce eggs or sperm so germ cell tumours can affect the ovaries or testes.
However, it is also possible for a germ cell tumour to develop in other parts of the body.
As a baby develops during pregnancy, the cells producing eggs or sperm normally move to the ovaries or testes.
However, rarely they can settle in other parts of the body where they can develop into tumours.
The most common places for this to happen are the bottom of the spine (sacrococcygeal), the brain, chest and abdomen.
Each year, fewer than 45 children in the UK develop malignant germ cell tumours.
Most children who develop germ cell tumours will be cured.
The cause of germ cell tumours is not well understood but research into the causes of different cancers is ongoing.
Doctors failed to investigate a tumour on Aoife’s bottom[/caption]
Just days after being reassured Aoife was suffering with constipation, her parents were told that she in fact had a rare form of cancer.
Eilish added: “It’s not about blame or anger, it’s about accountability.
“On the first night in Southend Hospital they told me I wasn’t feeding her properly or that she needed more exercise, but she had her horse and she rode her out every day.
“She had a huge tumour in her liver blocking her bowel.
She was scared because she had lost quite a lot of weight but she still had the courage in her and she was fighting with every ounce of her body, she was so brave
“When we were waiting to be transferred to GOSH we were shown an x-ray and you could see the diseases and tumours.
“We were aware it was in her liver and we knew we were in a bad situation.
“We were told by consultants at GOSH that she had germ cell cancer and it was welcomed because that type of cancer is so reactive to chemotherapy.
“But it was just too late. They didn’t give us a fair chance.
“She was scared because she had lost quite a lot of weight but she still had the courage in her and she was fighting with every ounce of her body, she was so brave.”
Just five days after getting her diagnosis, Aoife passed away suddenly in hospital on July 7.
“It was completely unexpected, she had a huge cardiac arrest,” Eilish said. “I held her because I knew something was wrong with her. She died in my arms.”
Eilish is now desperate to raise awareness of germ cell cancer and help other families who might be in a similar situation.
As soon as she passed away and I was out of the hospital I knew she couldn’t end there
Speaking to EssexLive, she said: “As soon as she passed away and I was out of the hospital I knew she couldn’t end there.
“Her life on this planet, that couldn’t just be it. We needed to do something for the other children.
“I was researching germ cell cancer and there’s no charity for it. It’s rare but very real, it can happen to anybody.
“I donated part of her organs, tissues and tumours to doctors so we can learn how to give more chances to other children. It couldn’t be in vain.”
Aoife’s organs, tissues and tumours were donated to doctors[/caption]
Eilish is in the process of setting up Aoife’s Bubbles, a dedicated germ cell charity to raise awareness and educate people about the symptoms, diagnosis and effects of the rare disease.
The charity will also raise funds to support sick children and families who are going through the same experience.
“We are aiming towards having enough funds in the next 18 months to buy our own place of respite, completely paid for and maintained by the charity,” Eilish said.
“It wouldn’t just be for the sick children but also for the family to make memories and have time together. If Aoife had continued her journey it would have been impossible for me and Richard to continue working, and a weekend away would have meant so much to us.
“The charity is in the process of being put together. We’re also doing a three peaks challenge in Wales in October where me, Richard and six other men are dressing up as Disney princesses.
More on cancer
“It’s really important to do it then because that’s the weekend she was due to finish her last cycle of chemotherapy.”
Southend University Hospital claim they are now undertaking a formal review process following Aoife’s death.
To donate to Aoife’s Bubbles you can visit Eilish’s Go Fund Me page.
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