Miracle For Monroe

We now have enough to purchase her first two suits for the year!!!

Yay! Thank you all so so much!

We will leave this page running to continue to raise funds for suits as she grows, for trial treatments and to fingers crossed get Monroe over to the UK to play in the low UV and see her friend Ellie!

Ellie is just like Monroe they are literally two peas in a pod, so getting them to play together is our next big dream, our sun is far too hot for Ellie so it makes more sense for us to head that way :)







Monroe was born happy, healthy and thriving. Not long after her birth she was red, this continued and were told it was a newborn rash. When I took Monroe home she wasn't settled, she cried a lot and nothing would soothe her, speaking with clinic nurses we were told she would just have reflux and there was not much that could be done. Monroe was still red and we were told its still the newborn rash. Monroe's rash got worse, we went back and forth before Drs saying its just eczema and slap steroid creams on her... We listened this was a new world for me (Hendrix having no skin issues), so I did as I was told.. I read up what I could and we tried every eczema "cure" you can think of from diet, to soaps to natural cures to medical cures... nothing worked. At around 5 months old Monroe got extremely unwell, I presented to emergency and demanded someone look at her properly as things were bad. She was immediately hospitalized, sent to a bigger hospital with a severe staph infection from severe eczema... The only place on her tiny body they could place an IV in was her scalp. This pattern continued, we would get Monroe well in hospital and within an hour of leaving the hospital have her flared again... I spoke with Drs and did my research before we realised that Monroe was in fact allergic to UV exposure, this means not only direct sun outdoors but fluorescent lighting too. We also learnt that not only was Monroe's eczema triggered by UV exposure she has "Solar Urticaria" meaning her skin will welt up, she is tired when exposed, gets joint pain, headaches, stomach aches and has had anaphylactic reactions. Monroe has spent years being a guinea pig to a rare condition, she's had everything from antihistamines to chemotherapy medications and her body and mind has suffered from it all. Living with this condition in Australia is extremely difficult, Monroe is often covered head to toe and even with full protection can spend her nights in pain. I am a single mother with two other children who also have additional needs, I currently can't work as I need to care for the children so life can be really difficult at times. We have fundraised previously to help Monroe with protective suits and to install a therapy spa into the home which has helped dramatically but Monroe is heading into school next year we need to ask for help again. Our first goal is to purchase Monroe two suits to enable her to be safe at school and not excluded from anything her friends may do. From there we'd love 2018 to be the year we find Monroe's Miracle. I don't know what that will be yet, but I want to be able to try a more holistic approach and see if we get any success that way. I know that finances are stretched for everyone these days, and we truly appreciate any support we get. Every single dollar counts and helps put us closer to reaching our goals. Monroe has spent years home bored and alone, please help us get Monroe into school and living the life she deserves. ✨ If you'd like to read more please visit www.facebook.com/miracleformonroe