To whom it may concern,
In April 2006 i delivered by c-section a 3lb baby girl that was not exspected to live,actually she was not exspected to even be born alive,a few short days mikiya was down to 1 lb 3ozs and gravely ill,and again not exspected to survive.
During her 3 1/2 months in neonatal intensive care at McMaster Childrens Hospital,it was brought to my attention that mikiya would require a feeding tube surgically implanted into to her already tiny body before she would even be considered to go home,however after approval was granted for the surgery i was phoned by the pediatric surgeon whom had refused the surgery,stating that he could not perform the surgery as mikiya would never make it off of the table because of her lung condition.
Three days later she was released and sent to the Greater Niagara General Hospital where she stayed for less then two weeks,she was labeled with an eating dissorder and they feared that she would fail to thrive.
Fortunetly after exstensive research i came up with my own plan so that mikiya would be able to sustain weight and grow at a regular pace,and only appear just shy of other children her age.
I was accredited by several doctors as we had defied their thoughts.
Mikiya was kept alive by an oscillating machine and even put into a coma so that the machines could work with her and her not work against them.
Since then many medical issue\s have risen with mikiya,to date she has officially been diagnosed with Pulmonary Hypoplasia,chronic lung disease of prematurity,hypoplastic lung syndrome and migrating rhuematoid arthritis which is still being investigated.
Mikiya to date is a normal looking 4 year old,anxious to start school and really just be with other kids,however mikiya's health prevents that sometimes as she is susseptible to germs and bacteria,when mikiya catches cold,which she does often,it becomes life threatening,at 3 years old both of mikiyas lungs collapsed after having her at the emergency room 4 timmes.
I have watched my daughter grow with what doctors have described as no hope,unfortunetly i have hope,and i have faith and i believe in miracles,i have seen them before my very eyes.
We have been dismissed by many doctors and have met others that have brightened my world.
When mikia first came home she slept in a crib right next to my bed,as she got bigger and suffered more apneas,she slep in my bed,to this day she still sleeps in my bed for fear that she stops breathing,and she has.
I have not had a full nights sleep or a good deep rested sleep in 3 1/2 years,every morning when i wake i always turn to watch that mikiya's chest is still rising.
She still has an eating dissorder which is monitored very closely and remains on supplements that ensure proper weight management and vitamin supply.
At this date mikiya is 4 years old and weighs 27 lbs,she is tall with a slim build and has blonde hair with blue eyes.
I will appeal disabilities denial,and i will fight for my daughters rights,i don't take it lightly that mikiya was denied however,a drug addict that uses methadone can recieve disability because they are too stoned to work and keep a job.
There is something wrong there.
I have also registered mikiya for school and have run into problems there,she so far is being denied an education because the school doesn't know nor have a protocol for a situation like this,protocol would be that if something happens at school....call 911.
Instead,the school wanted me to get a medical release so that mikiya could attend...and i did.
Once the paper work was in i had to sign forms so that the school board could gain access to mikiyas medical records.
Now,i have to wait for the actual school board to make a decision,and attend a meeting that will be open for dicussion.
The principal at the school asked why i would even want mikiya to attend school...my answer was simple....because it's her right to have an education,sick or not!
Then she asked if i would consider waiting and putting her in school for grade one,mikiya doesn't have a learning disability,she has a growing and breathing disability.
So where i stand is here..the government says mikiya isn't sick enough,yet the school board says she's too sick and she's a liability.
Could disability's denial be based upon dollar signs,and how they would owe me back pay for the last 4 years,of course thats it,thats why they wanted me to terminate a pregnancy that took me 3 years to achieve,they didn't want another government assisted child.
So now i ask for help from the public and officials,i want some answers.
After monday i will contact news rooms and newspapers.
Without predjudice and with the best intentions
Shelley Murdock
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1 comment:
Good luck with your crusade! There is so much inequity with our health care system, and for preemies in particular. Thank you and please post your progress.
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