Chloe Louise is a beautiful little girl who is only 8 years old and yet she has been through more than what most people go through in a lifetime, at just 2 & a half years Chloes parents noticed some problems developing with their little princess, from bladder problems to blood & swelling to uncontrollable screaming and so their journey began to find out what was causing their beautiful little princess so much pain.
After many Doctors, blood tests, MRI's, xrays, ultrasounds, different medications and even operations, Jacqui & David where still no closer to finding anything out. They were referred to a gyno at the Melbourne Children's Hospital for even more tests, more operations and of course more Doctors until Chloes name was put on a paediatric problem email group that is world wide and finally they got an answer and their beautiful little princess was diagnosed with a disorder called Vulva Erythromelalgia or EM as its commonly called, Erythromelalgia is a very rare and very devastating disorder that affects your skin causing redness, swelling, intense heat and severe pain.
The diagnosis didnt stop there Chloe was also diagnosed with Interstitial Cystitis, Ehlers Danlos Syndrome type 3, Vaso Vagal Syncope and Complex Regional Pain Syndrome...
She is on a range of medications, Her parents have also had to install a air conditioner in her bedroom as well as get cooling mats, cooling scarfs & masks just to try to keep her body cool, Sadly the disorder means that the heat affects her really bad and causes immense pain as well as swollen and extremely painful joints, also sometimes fainting due to her bodys reaction to the heat and cracking bones which will most likly cause Arthritis. She has missed numerous days of school, she cant play many sports or do much physical activity because of what the heat does to her body and to top it all off she has heart problems.
Chloe comes from a loving family with hard working parents and 2 brothers, The first thing that comes to mind when I think of how to describe Jacqui & David, They would go to the end of the universe and back to help their children, They will bend over backwards to help people when they can and of course with them their kids always come first no matter what.
Chloes Father David is the type of guy that any little girl would be proud to have as their daddy, not only is he a father and works full time but he is also a volunteer fire fighter, which sadly means there is times when he has to go away to fight the fires to help other families.
Chloes mother Jacqui is a beautiful woman who has incredible strength, she is in the office at the same fire department as her husband. You can see in the photos that Jacqui very proudly displays on her facebook that her children & husband are her world. She is clearly a very proud mum.
When I told her i dont know how she does it all and still remains strong, Jacquis reply was simple, "Its heartbreaking but shes strong due to Chloe and shes thankful that Chloes still smiles, They make the most of the good days".
The cost of the medication and treatment for Chloe is massive and something that she cant live without, Imagine if it was your child and you were faced with having to witness them in pain knowing that even though with all your heart and soul you want to make them not go through the pain, there is only so much you can do.
No little girl should ever have to go through what Chloe has to face everyday, She should be able to run, play sports, enjoy the sunshine and live the life of a normal little girl, The strength that she has is more than I have seen in most adults, The kind heart and gentle soul is something she clearly got from her parents because even through all the pain, tears, medications, operations, Dr visits and hospital dashes she still manages to find a smile and what a beautiful smile it is.
Jacqui and David are the type of people who always put others before themselves and even though they need help to cover the cost of everything, they wouldnt ask.
So I am going to ask, Please can you share this beautiful little girls story with your family and friends.
I am going to arrange a fund raising auction to help them get the funds they need to be able to afford the treatments that Chloe needs.
If you would like to donate funds or something to be auctioned please contact me at
princesschloesmiles@gmail.com
It is a email account I set up specially for this cause.
It doesnt matter what it is, big or small.
Please help me get behind this beautiful little princess and her family.
Next time your watching your children play or do things that a normal childhood involves, please spare a thought for Chloe.
Lets dig deep and help this family out, After all its what they would do if it was your child and they could help you, David gives up time away from his children and wife every year to fight fires and help keep your families and friends safe, the least we can do is help them when they need it.
Every little girl deserves to be a Princess.
Love Always
Mandy
xoxo
princesschloesmiles@gmail.com
