Make Gypsy Mae smile through chemo.

The story below is a really short version giving the main points in Gypsy’s journey that is her life. In the past we have asked for donations for many charities, such as CLIC Sargent and Cancer research and many more, raising well over £8000 and we intend to continue to do this in the future to give back. But this is the first time we’ve asked for money directly for Gypsy Mae. The money will be used for planning day trips, treats, weekend breaks and hospital living, plus anything that will put a smile on her face, especially now as she’s starting to get really low and fed up of it all now, she can no longer do her passion, gymnastics as she just to weak and in pain, so if we can make her smile and plan things to look forward to, for example she’d like to see little Mix and also go on a hot tub weekend break. So if you can help in any way, either by giving as little or as much as you can or by sharing this with friends, family and work colleagues we’d be so grateful. 

Gypsy was born in June 2007 via a C Section and came out crying and didn’t sleep more than 2 hours at a time and just seemed to hate everybody and everything, only ever happy when with me, her mum. Things where very hard, knowing something was very wrong but not knowing why!!! 

At the age of 6/7 months old, Gypsy had become what was referred to as “failure to thrive”, as she began to waste away, she was seen by Our local hospital, Bangor, Alder Hey and we even went private but we still needed to fight hard to finally at the age of 3.5 years old and many tests and pushing by us the parents later, Gypsy Mae was diagnosed in 2011 with a rare condition called, Diencephalic syndrome, a brain tumour that was literally making her waste away to the point you could pick her skin up, where she no longer fit her own skin.

She was given a 20% chance of survival at this point and we where told to prepare for the worst. At the time she was the only child with the condition and is now the oldest surviving child of this said condition. She then went through two years of chemotherapy to hopefully stabilise the tumour, but it did more than that and actually shrunk it!! But Gypsy spent most of this time in and out of hospital as it was really hard going on her weak body.

It’s been a long road even after chemo finished for many reasons. This condition isn’t going anywhere, we’ve been told this is life and she will be on chemotherapy/radiotherapy on and off for 20+ years. She was finally diagnosed with brain injury, that mimicked autism. She’s also over the years been diagnosed with the following:-

-Anxiety

-Extreme separation anxiety

-Sensory processing disorder

-Selective Mutism

-Communication/competence impairment

-Damage to temperature regulation

-Poor sleep pattern

-easily over-stimulated with auditory, olfaction and tactile input

-fatigued easily

-poor abstract reasoning ability

-emotionally overwhelmed.

-Emetophobia(fear of sickness)

She is now Home educated due to all of the above and school being to much for her to bare. The world to Gypsy is very scary and sometimes doesn’t make sense, hence her home/bedroom is her safe place. She’s over come so many things over the years and is one tough cookie. But day to day life can be hard going for her, it could be a sound or a smell, a person or a place that sends her into emotional shutdown and mutism or worrying someone will be sick(vomit), she also has association to sick, so if there’s a memory we can’t repeat it in case someone is sick again. She would literally put herself in danger to avoid it. So new places, people sounds etc can easily overwhelm her brain, but each day is different, sleep, food and weather will all contribute to how she reacts, we plan best we can and now have ways to cope.

She’s start her next lot of chemo in November 2018 for another two years. It is given every week in Alder Hey, although it’s not as harsh as her last lot of chemo it’s not without it’s own side affects and issues. She has neuropathy in her arms, hands, legs, feet and jaw and shoulder. She needs more tests on her growth hormones which where affect by the last chemo but only just showing it’s head now, so that means hormones for life and it’s now affecting her kidneys but we’re not sure why, so again more tests to get to the bottom of it. 

Thank you if you’ve read this far and we promise tokeep you posted on her progress. 

♥️