Help to save Jazzy from her painful battle of CRPS

Our 12 year old daughter, Jazmin is a kind hearted little soul. She loves to bring a smile to someone’s day, even if she doesn’t know them. Anyone that has had the privilege of having one of these encounters with her, knows too well that she leaves an imprint, of her zesty sparkle, that forever stays with you. Jaz loves singing, reading, art, mermaids, Taylor Swift and ballet.

It was 4 days before Jazmin’s 8th birthday, that our world was turned upside down. It took a year and a half, before she was finally and officially diagnosed with CRPS (Complex Regional Pain Syndrome). CRPS is neurological condition that is not only very complex, but causes severe and persistent pain. It is rated the most painful condition on, The McGill Pain Scale.

At the time of diagnosis, we thought this would bring us answers, treatment and finally an end to our daughter’s suffering. But, we were very wrong.

We had never even heard of this debilitating disease. Unfortunately, we quickly learned that even most doctors and medical professionals that crossed our path along the way, had also never heard of CRPS or how to treat it properly.

Jazmin suffers daily from excruciating pain. Mobility in her left ankle and leg has been effected and she feels unbearable pain all the way to the top of her head. She is on intense medication daily, none of which relieve the pain that she suffers. Daily tasks like having a shower, are intolerable and bring her to tears. Just the lightest touch from the water, makes her skin feel like someone is pouring a bucket of pins all over her body.

Alongside the constant pain, it feels like her bones are being crushed or stabbed with a knife. She suffers swelling, bruising, discolouration, extreme temperature changes, fatigue and insomnia (just to name a few). Her body also feels like it is on fire, literally. Even wearing clothes, causes pain, as the fabric feels like sandpaper and makes certain clothing unbearable to wear.

These last 5 years, are not ones that we would like to remember. They have been filled with many painful memories and moments we would rather erase. Jazmin’s pain has aggressively become worse, as her CRPS becomes more advanced and makes its way through her fragile body.

We have watched our happy, vibrant and active little girl, robbed of her childhood and deteriorate, as she suffers daily from excruciating pain.

As a parent, to sit and watch our child in agonising pain, is utterly gut wrenching and absolutely soul destroying. To feel like your hands are tied, as you helplessly sit by and watch and have no medical help to support you. It is something that changes you, something that chips away at your heart and at your very existence.

Jazmin goes to battle with her body, day after day. She constantly begs for her pain to stop, as she helplessly pleas with her own body, as it becomes intolerable. Exhaustion is a regular part of Jazmin’s days, as the pain takes over, her body can’t handle much more. She is overwhelmed with pain and trying to cope with CRPS and all that it brings with it. She refers to CRPS as, ‘the great evil’. Jazmin writes, ‘a dark wave of sadness or even anger, frustration and confusion covers my mind and makes my heart feel sad.’

Our beautiful girl has lost her spark and that once strong spirit of hers, is now barely a flicker on a burning candle.

There is no cure for CRPS, but remission can be possible. There is no treatment here in Australia that treats the cause of the pain.

There is however, a place that does offer such treatment. A specialised clinic overseas, located in the USA, called The Spero Clinic. And it has very successful outcomes of CRPS patients that do go into remission and restore function.The Spero Clinic is the only one of it’s kind, that specialises in the treatment of CRPS. It uses state of the art treatment that utilises innovative therapies, carried out by specialists, such as neurostimulation techniques and physical therapy.

We believe that this is our only hope to help Jazmin and to give her a chance at a life she deserves.

The only downside, is the substantial cost. This is something far beyond our means, for us to achieve on our own. Which is why we are reaching out and asking for people to open their hearts and help us to achieve this dream for Jazzy.

This is why we have set up this Go Fund Me Campaign to help raise the necessary funds to make this possible. Funds raised will go towards getting Jazmin to The Spero Clinic and all associated medical and travel costs, that we encounter.

Every bit counts, no matter the amount, it’s all a step closer to recovery and achieving the end goal, of a happy and pain free life for Jazmin. And you will help alleviate the financial burden that this brings on our family.

Anyone that knows us, knows that we are very private people and never ask for help. We are usually the ones that are always there with a helping hand for others. But, we hope that this will show Jazmin that it’s ok to ask for help and that we are not alone any more. And that your generosity will help to restore some of that hope, that has been lost.

No child should have to live a life that is constantly full of pain.

To hear the sound of laughter echo through out the walls of our home, rather than screams of pain, should not be something that we just dream of, it should just be our reality.

Please share Jazmin’s story far and wide, for not only does your contribution help her, but it also spreads awareness of CRPS. So, that in the future, no one should have to feel alone, or to battle this disease in silence or without treatment available to them.

Thank you, from the absolute bottom of our hearts for even considering Jazzy’s cause. Every act of human kindness that you can contribute, is one that shows Jazmin that there is good in this world, no matter what your going through.

With great appreciation

Jazmin, Mandy, Brent & Kodi.