Help Sharai get her Happy back
This is Sharia’s Story.
30 months ago Sharai was just like every happy healthy 6 year old who played with her brother ran with her dog and rode her ponies and carried miss Henny penny her favorite chook every where under her arm on our property, always cheeky always smiling and always showing that beautiful wonderful big smile she had to every one, she met.
Her brother levi played sports and rode his bike, fished in our dam and i having raised 2 grown up boys and running 2 businesses enjoyed running our small property alone, life was great and we were happy.
One morning however Sharai came down with a mysterious saddle rash that ran down her legs and temperatures ranging 40 to 42 degrees.
And All Of our lives were changed in an instant.
I raced her off to the Doctor 3 times in that first month to be told each time she was having an allergic reaction aka Hives and handed a script for steroid creams, told to give her panadol for the fevers and that the temperature would settle when the rash went away, she will be fine is all the doctor said.
On the 3rd visit i demanded blood tests be taken as I just new this was not hives or an ellergic reaction, it was going on too long, not only did she itch for hour after hour all through the nite, i changed her sheets over and over again the creams only irritated her itch and the panadol didnt put the temps at bay and now she appeared to have a blader infection.
Sharai had her 1st (of what is now more like1000s of blood tests and needle pricks to follow) We were again sent home from the local doctors and told she is just having an allergic reaction and i was over reacting as on the 4th visit we were told her Blood test were all good!
Then it happened!
into the 4th week on our funday family Sunday, I took my kids to a movie, half way thru the movie Sharai climbed into my lap whimpering i dont feel so good mummy, and I nearly died!
She was boiling hot, so hot in fact that we raced out of the movies straight to Accident and Emergency in Hervey Bay.
More bloods were taken and the past weeks explained to only be told again that Nothing is wrong with her!
I was told to come back in 5 days to see paediatrics.
This time however I stood my ground and cried Something is wrong with my baby and i will not leave this hospital until peads has checked her over thoroughly.
I was so worked up in fear of what was not being seen that I was fully prepared to stand at the emergancy window until paeds had seen her, more bloods were taken and urine tests added.
I called a friend to collect my son whom was only 8 at midnight as I was settling in like it or not, with Sharai craddled in my arms.
I know my little girl and this isn't/ wasnt normal, she screams with the itch she has severe stomach pain and ridiculous temperatures, we are not leaving that hospital until paediatrics see her tomorrow!
They had no choice, we were staying!
They found us a room at 1am.
Within hours of waking the next day and with only minutes notice, Sharai was suddenly an emergancy and we were flown down to the Royal Children's Hospital with a mysteries virus...
An artery to her heart was enlarged and her spleen was enlarged, her crp and esrs were off this planet.
Initially she was dignosed with Kawasakis disease and we were kept at the hospital where many many more tests were taken
Sharai was given high doses of pain relief and anti-histamines and on aspirin for the next 90 days, but this didnt seem to settle down the rash or the fevers.
Her inflammation markers continued to be off the planet and for the following 4 months she underwent daily blood tests, skin biopsies, bone marrow tests pet scans cat scans X- rays, lymph nodes were removed under General anathetic, from her groin and numerous other terrifying tests for a little 6 year old girl, whom by now was absolutley terrified, and literelly screamed in panic at a doctor or nurse heading in her direction, again to only be told " we know she doesn't have 400 things".
No virus or bacteria could be found.
She was eventually given massive doses via a drip infusion of Methal prednisone 750mlgrms dripped slowly into her tiny body over 3hrs a day for 3 days in a row ( this too became a regular occerrence) This sent her into an extremely aggressive state for the duration of the treatment, i could only watch mortified and silently crying so as not to scare her as i watched my sweet little girl aggressivley thrash around on the hospital bed for days as the steroids sent her into massive roid rage.
this was getting scary fo me and as you could probably imagine absolutley horrific for a child to even fatham. This course of treatment did not help in fact nothing seemed to help my little girl whom by now was showing other symptom's for example, the mysterious rash had spread and all though not classic of any illness as 10 bat teams expressed in there confusion, decided to hand us onto the
JSIA team ( Juvenile Systemic Idiopathic Arthritis) the Doctor’s added methotrexate and higher daily steroid doses- 25mlgrms of prednisolone to her routine. I questioned the doctor a few times about why he is prescribing arthritis meds aka cancer medication used to supress ones immune system, when she hasnt shown or wasnt presented to hospital months back with joint pain, he explained after having heart, lung, kidney, spleen ,skin, etc, etc, etc teams all working on her and although she isnt showing any classic signs of any 1 disease, 3 teams of the 10 handed us to him and he said simply: she will.
When i asked what can we expect for her future, will this disease go away, he explained it like this.
there are usually 3 possible out comes.
1. The disease turns off as quick as it turned on
2. The disease, goes into a medicated remmisson
3. that Sharai could possibily be a lifer, a hospital child that lives in hospital most of the time time having infusions and steroids shots to her joints, stronger cyotoxic medication many opperations, deformity and possible death!
"meanwhile with my 8 year old son being bounced around friends and his father for few months so far, hearng the fright in his voice as to where we were and why we hadnt come home yet"
I started researching JSIA and the drugs like a woman possessed, with lots of hospital chair time on my hands and fear in my heart for Sharais future, i searched every search engine on every link in every country the disease the drugs and the outcomes, what i discovered was All mothers worst nightmare!
I confronted the doctor with my findings i had read and mentioned the side effects to the methotrexate and the steroids can cause the symptoms of JSIA and i meantioned the damage these meds, will have on her in the long term use of them, again questioning why she is being given medication for symtoms she didnt present at hospital with that can have or cause possible side affects that are the actual disease! I dragged the doctor into the hallway of the hospital my whole body shaking I whispered, She isnt going to die from this disease, she could die of cyotoxic poisoning couldnt she, to which he just looked me in the eyes and nodded.
the river burst and the tears flowed as i asked then why would you give hera small beautiful child, my baby, my only daughter these medications?
he replied with
"All we know at this moment in time is that her immune system is attacking her healthy organs because it could not find any bacteria or virus in her body hence her
eventually being diagnosed with Systemic Juvenile Idiopathic Arthritis. "
Within weeks of being released from hospital her temps were back up her rash was all over her body now and she couldn't walk and relied on a wheel chair to get about.
Back to hospital we went..
More aggressive steroid treatment was applied Methal Pred infusion over 3days again and a
higher dose of methatrexate prescribed.
Apparently it's rare that a child doesn't respond to these 2 meds.
Sharai crashed again and we were rushed back to hospital.
A new drug was introduced at a cost of 30k a year, to the drugs she was already on, the new drug was called toxilumbazab, it was given fortnightly via infusion and needs to be given near ICU ward because it can cause death due to an allergic reaction wether it be the first or 400th infusion, and risks of infection can also be fatal!.
Another horrific discovery as a parent..
Although her infusions at the time seemed to give her some relief regarding her inflammation markers on occasions, it had not or didn't work as well as it should have, i begged her doctor to continue searching for the cause of her symptoms because by now the symptoms were getting worse and she had nearly ever side effect of all the meds.
Rapid heart beat in rest
Shortness of breath
Vomiting
Diarrhoea
Temps
Rashes
Muscle pain
Kidney pain
Rotten breath
Joint pains in every joint in her body and inflamation.
Sharia has been raced back to hospital many times where aggressive steroids are needed to stabilize her (her doctors words) because she keeps getting the flu or a bug that causes extreme stomach pains vomiting and diarrhoea and is life threatening shes had at least 15 rounds of methalpred
6 rounds of a general anaesthetic for 14 to 16 joints injected with steroids of which only help for a couple if weeks, i no longer allow the methal pred infusions as they dont work!
2 rounds of a general anasthetic for bone marrow and bone scrapings.
All these meds are cytoxic and can cause cancer along with a lot of other terrifying side effects including sudden death.
Because of this whenever we go to the emergency room sharia is classed as a category 2 patient.
Which means she gets rushed through the system and is a priority patient.
With all this aggressive treatment Sharia’s little body has gotten worse.
All her joints are effected and swollen daily she can't walk,and is again wheel chair bound.
Last year alone sharai was admitted to hospital over 27 times.
Sharai wakes up nightly screaming sometimes up to 10 times a night.
Twice in the last 6 months I have woken to hear a gurgling noise beside me, she has vomited and is choking on it. This has happened before too and it makes it very scary to not sleep beside her.
This terrifies us both, she is now having trouble with leaving my side and lives daily in fear of something happening to her and when at home is a cling on to myself or her now 11 year old brother, Who is also so young to have this sort of pressure apied daily, he doesnt really understand why she cant play anymore.
She has missed in 3 years about 18 months of grade 1, 2 and 3
When she did go to school she followed her brother around because she was scared no one else would know how to help her. (just in case she says. )
I had her seeing a psychologist for her fears and her extreme separation anxiety and although we thought we were getting ahead we werent unfortunately her fear has raised its head again.
I believed Sharai had a terrible horrific trauma that triggeted tjis disease at first her doctor woyld not even entertain that idea, now however he sees it as a possibility she witnessed her dog be torn apart by her other big dog and she got covered with blood and watched on in horror until I managed to stop it and race her and her brother inside.
I asked her government based psychologist to help her rid her mind of that vision, but he seemed to think the separation anxiety she had of me stepping out of her presence was a bigger issue!
I found a doctor that used a technique called tapping and it is really helping her rid her mind of that visual.
She is now 9 years of age and hasnt been to school for 6 months, i have had to shut down my businesses and live iff every last cent of my lifes savings, i have canceled life insurance policys as old as 28 years, sold everything that this economy has allowed me too, my beautiful car has sat in my drive for 2 and a half years as it isnt a priority although more comfortable for her to get about in than the little beep beep i picked up.
My morgage is behind as are my rates i guess at the end of the day you loose it all, you actually dont care, you dont have time too, your priority is your children and saving them, i mean its all nothing with out them right?
How do you go to work when 20 hours your baby girl is screaming in agony, because it feels like someone is throwing bricks at her, or you may find tomorrow could be a 4 month hospital stay.
How can you work when you are afraid to leave her because you hear her crying to god please i just want die, asking me if the blue pill will help her not wake up ever again like her doggy.
for 2 years she stayed strong and as positive as she could be, still managing to smile at a stranger cause she was always looking at the good in things and took a lot on her chin cause shes amazing like that.
I asked her why would she want to know that and she said cause I don't want to wake up any more mummy..
I hear her crying because she misses her friends and she wo ders if they will forget her.
I have taken her to healers and alternative doctors like Chinese, kynesiologist and of The Tolmans of the World but phew for natural alternatives there really un affordable, her body is shutting down and a blood tranfusion was needed last week along with more injections to toes ankles fingers, elbows and knees and an NG tube was placed down her nose to her tummy, again i watched on in agony not being able to help her
We had huge success for about 3 months when we tried a new drug called anakinara at the beginning of the year and an all organic way of life for eating, washing in and everything changed to organic in our lives and for the first time in 2 years she got out of her wheel chair and stayed out, she ran and jumped and played and as soon as we started taking down the steroid dose from the 25mgms she started flaring up and nothing is helping, even the double injection of 2mls anakinara daily wasnt working. ( we got about 3 months of quality life outside of the needle time each day and it was just beautiful to see her and my son smile, it was really nice to have a good couple of months in our own beds too.
her doctor wants me to now put her on thelidomide , or some lesser cytoxic than the anakinara or toxilumbazab call adabacept ( hmmm if they didnt work and it is less affective? ) to replace the anakinara but I wont let him.
After seeing how depleted she was he took her off all meds except steroids and instead of looking at her as a whole human being that needs serious help repairing the damage aka effects of the medication, her bodys loss of ability to absorb and utilize the vitamins minerals etc to her gut heart lungs etc etc
They want to give her more cyotoxic
when is enough enough?
Doctors overseas tell me her little body is poisoned thru over dose of cyotoxic medications..
I am telling our story because i want you all to know where we have been and why we may have vanished from your lives, i want you to know that you can one day have it all and the next be begging for 9 months for a disability pension to feed your sick child and young son, that after never being unemployed and paying massive taxes respectively you will get a gentle tap on the arm saying they dont really care about your sick dying child at centrelink and hey THEY DONT.
im writing to say you cant give away property in an economy that cant afford it.
Im writing to ask you help me find a cure or a better quality of life for Sharai.
Help me to help her walk again or at least make her home wheel chair and disabled able.
Or better yet buy my properties so i can clear the debts that dont stop knocking on our door every second of the day, because you cant carry that ball anymore just maybe i could have a chance to give them a better quality of life with out the worry of tax man or government taking those possessions.
They dont care that your taxes for 30 years were abundant and fed familys, nope sir they do not.
Im standing here more vunerable
More naked to the world than i ever thought possible, for you my 2 sweetest most loving most precious gifts i say I will always, always love you 6 many much My Darling levi My Sweet Princess Sharai.♡♡♡
Help me find My familys Happy x
Thank you in advance.
We will stay positive.
We will find the cure for this uncurable.
Miracles happen Right!
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