Younger mum who thought she had dry eyes abruptly instructed she has months to dwell

A brand new mum who thought she simply had “dry eyes” was recognized with a mind tumour and instructed she had simply months to dwell.

Rachael Burns, 22, began noticing modifications to her eyesight after giving delivery to her daughter, Raeya, one. The migraines she had suffered with for years intensified and she or he went to see an optician. She was instructed she had a ‘dry eye’ and was despatched dwelling with eyedrops and glasses however Rachael’s eyesight worsened.

It received so dangerous her face turned lopsided and she or he was unable to open one eye and was referred to Royal Victoria Hospital. An MRI scan revealed a high-grade cancerous tumour – diffuse midline glioma (DIPG) – that had already unfold down her backbone. Rachael has been instructed she has simply months to dwell and her household are hoping to boost £150,000 for life-extending remedy.

Rachael from Belfast, Northern Eire, stated: “After I was instructed I had a mind tumour my total world fell aside. I used to be instructed that the life expectancy of somebody with my analysis was 12 months, and I had already been exhibiting signs for eight. I simply did not anticipate to obtain information that terrible. I would hoped to perhaps have no less than a yr or two. This massively affected me mentally. I simply kind of crumbled.”

Rachael seen her signs in March 2023 and needed to spend many days in mattress to ease the stress in her head. She stated: “Specsavers stated I had ‘dry eye’ and was doubly quick sighted. I used to be despatched dwelling with eyedrops and glasses which simply made me really feel dizzier.

“My eyesight worsened, resulting in me stroll in entrance of automobiles because of the blind spot on my proper facet. I may not take my daughter out of the home alone as I used to be so frightened I’d put her in peril. I felt like I used to be being dramatic, and this led to me ready even longer to get assist.”

Rachael was recognized in Could 2024 after being referred to being pressing care. Medical doctors stated surgical procedure was not an choice because of the tumour being positioned on Rachael’s brainstem. She is now going via six weeks of gruelling radiation remedy, with 30 classes on her mind and 28 classes on her spinal wire.

Rachael stated: “Some days I am going to get up and my legs will not work, and I will be crying in agony for hours at a time with the ache. My companion Robert has needed to take over most of our daughter’s care and it makes me really feel so ineffective, like I am already being stripped of a number of my motherhood.

“Some days I can stroll unassisted and I will carry Raeya. All I can do is hope that I get as many good days like that as doable as a result of recollections with my household are all that matter to me now. I’ve researched a number of different younger individuals with my analysis who say radiation simply did not work at shrinking their tumour in any respect, so we as a household got down to discover any doable trials or medicine which may give me an opportunity.”

Rachael and her household at the moment are within the means of fundraising to pay for doubtlessly life-extending remedy. The ONC201 drug administered privately in Germany has up to now extended sufferers’ lives by virtually two years. To pay for the price of consultations, personal scans, journey prices, lodging, and the medicine themselves, Rachael is hoping to boost £150,000 and is already over midway there.

“As laborious as it’s to ask for assist, I am actually swallowing my satisfaction and letting myself be weak sufficient to beg for this additional time,” stated Rachael. “I’m not prepared to depart my household and my child. “One yr is just not wherever close to sufficient time to get to expertise the present of motherhood and have it stripped from you. I am going to by no means see Raeya stroll down the aisle and for what? Simply dangerous luck? It is not honest.

“I could not get to take her to her first day of faculty however any additional days together with her might be a blessing so I’ll struggle with all the pieces in me to get up to her every morning. One thing must be completed to assist individuals in conditions just like mine. There may be not sufficient consciousness and never sufficient funding put into mind tumour analysis when it’s killing harmless kids and younger adults each single day and the world is occurring as regular.

“If extra individuals knew simply how devastating the consequences of mind tumours are on not simply the individual recognized however their total household and everybody round them who loves them, perhaps we may push for extra choices and extra therapies as no one deserves a destiny this merciless.”

Louise Aubrey, neighborhood improvement supervisor at Mind Tumour Analysis, stated: “It is a tragedy {that a} younger mom like Rachael can not get one of the best medicine and remedy within the UK, and as a substitute has to spend lots of of 1000’s for the possibility to spend extra time together with her daughter.

“Mind tumours kill extra kids and adults underneath the age of 40 than another most cancers, but only one per cent of the nationwide spend on most cancers analysis has been allotted to mind tumours since data started in 2002. That is unacceptable. A lot extra must be completed to forestall younger households like Rachael’s from being ripped aside by this devastating illness.”

To donate to Rachael’s fundraising web page, go to the GoFundMe web page.