My son has a brain tumour the size of a tangerine – help us get to the States for his treatment

Admin (12 November, 2015) Health

Desperate mum needs to raise money to get her whole family to the USA

6455Kelly with thirteen-year-old Alfie, who has a brain tumour the size of a tangerine

A mother of three is desperately fundraising while she waits for the call to say she can take her son to America for the life-saving treatment he needs to get rid of his tangerine-sized brain tumour.

Since his recent second relapse, thirteen-year-old Alfie Barrett’s family has been getting ready to drop everything to spend nine weeks in the States so he can get the pioneering proton therapy he needs to stay alive.

His mother Kelly Barrett, 35, has been in a living nightmare since her first-born was a toddler and she noticed him walking on his tip-toes all the time, which can be indicative of a neurological condition. After a barrage of tests he was finally diagnosed with a brain tumour at the age of five in February 2007.

Before that year was out the family was hit with another tragedy when Kelly’s sister Bonnie was violently murdered by a killer in east London.

Derek Brown was said to be emulating Jack the Ripper when he killed 24-year-old Bonnie Barrett and DVD seller, Xiao Mei Guo. He was jailed in 2008 as Alfie entered his second year of chemotherapy.

The treatment gave the growing boy lasting nerve damage, but did not even shrink the tumour. The sizeable growth could not be operated on because it was so close to his brain stem but it was at least inactive and the doctors said he was therefore in remission.  Kelly, who lives on the Aylesbury Estate with Alfie and her two other children, Freddie, 9,  and Bonnie,7, looked forward to giving her son a normal life and hoped his endless months in hospital were over.

“I didn’t ever think it would come back,” said Kelly, but in 2012 Alfie mentioned he was having headaches. “Alfie won’t say anything to me usually. He’ll wait until he can’t take it anymore and then he’ll ask for a paracetamol. He just wants to carry on a normal life,” said Kelly. But when he woke one night with a numb left arm and a high temperature, she rushed him to hospital.

After being admitted to A&E, doctors initially dismissed Alfie’s symptoms as a bug and Kelly was advised to go home and give him a paracetamol.

Knowing there was something more serious wrong, she contacted the consultant she knew from when Alfie was in hospital the first time and he was soon booked in for an MRI scan at the Royal Marsden.

“Those were the worst two weeks of my life,” said Kelly of the wait for the results. Alfie was ten years old when they were given the shattering news that his tumour was growing once again.

After another year of chemotherapy, Alfie went back into remission again but last month Kelly heard the words she had been dreading: ‘mum, I’ve got a headache’. Alfie was also feeling very weak and dizzy. She took him in to A&E and again where he was admitted and booked in for an MRI scan the next day.

To Kelly’s relief, the doctor gave Alfie the all-clear and said it must be a virus making him feel ill. Days later she had a letter through the post asking her to take Alfie to the radiotherapy unit at the Royal Marsden where Kelly discovered Alfie’s brain tumour was growing again.

The boy who always comes top of his class at Walworth Academy has recently had to stop going to school because he is too weak and has recently had to use a wheelchair to get about in, though he remains determined to walk.

Alfie in hospital when he was younger

Alfie in hospital when he was younger

The only option left open to Alfie now is to get proton therapy, which can target the tumour directly instead of blasting everything in the vicinity like chemotherapy. The treatment is not available in this country so Kelly is now frantically making arrangements for her and her three children to go to America as soon as possible.

Alfie’s treatment will be paid for as will his accommodation but Kelly needs to raise the money to pay for the other two children to come with them as there is no one else who can look after them and cover their food and expenses for nine weeks.

“I feel like I’m poncing,” said Kelly. “If I had family to go to for this sort of money, I would but they ain’t got it.”

There are serious possible side effects from the proton therapy including strokes, blindness, deafness, paralysis and a second tumour developing, but Kelly said: “I either take a gamble or lose” as the terrifying reality of his second relapse has started to sink in.

But at night she lies awake thinking about what might happen to her baby boy.

“I’m worried about everything. He could come back blind or worse. It’s heart-breaking,” said Kelly. “It’s horrible watching your child suffer because you can’t take the pain away from them.”

Gary Valentine Fuller, who recently set up the MumMum Foundation for mums with cancer, has started a JustGiving page for Kelly to raise the money they need to get them out to America and a bit more besides to send the family on a much-needed holiday after Alfie’s treatment.

To donate, visit https://crowdfunding.justgiving.com/gary-valentinefuller-4

The large white circle at the centre of this brain scan is Alfie's tumour

The large white circle at the centre of this brain scan is Alfie’s tumour

Leave a Comment

Your email address will not be published.

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>

*