LIFE SAVING FOR RARE CONDITION

BEFORE                                            NOW

Hi! I am a home compassionate care and social worker for Amit Kukreja and even though his medical journey have been nothing less than a nightmare and laden with turmoil, I am constantly surprised with the spirit with which he is dealing with this terminal rare condition.

                        SOME EFFECTS OF IMPAIRMENT

Some of you may already know that Amit has been an acclaimed chef by profession and an artist by soul with his paintings, poetry, words and photography. He started showing medical symptoms in 2011 which has overtime been highly progressive and degenerative.

         DEVELOPING ABNORMALITIES IN SKELETAL 

                    LIFELONG DISABILITY REPORT

If I was to give detailed medical prognosis until now I would probably be writing for a number of days, but an overview of his constellation of symptoms has ranged from  arthralgias, extreme neuropathic pains, purpuric pigmentation and lesions, seizures and absence seizures, rheumatological conditions and vasculitis, speech impairment episodes, nerve entrapment, peripheral neuropathy, loss of sensation, growth adrenal gland, insomnia, light sensitivity, orthostatic light headedness, loss of appetite, right sided tinnitus, dysphasia, general weakness and so on and on and on...

                LESIONS AT MULTIPLE LOCATIONS

BASICALLY, 4 years till mid 2015 after visiting 40 specialists, 18 super specialist and admitted multiple times repeatedly in at least 6 hospitals no one could give a diagnosis for his rapidly progressing symptoms and at this point, he has been completely on liquid diet, not allowed to work been rendered disabled lifelong since 2014 rendered to degenerate and by 2015 termed terminal with swelling on his legs so bad that it became necrotizing at his muscular level. 

IMPACTED LEG NECROTIZING & GANGRENE ONSET

                 PROGRESSION OF SYMPTOMS

                             WORSENING CONDITION

By this point with no answers available a University Internal Medicine research department in the US had taken up his case and came with a rare prognosis of Paraneo plastic syndromes, rare enough that generally diagnosed post autopsy.

                           MEDICAL OVERVIEW

                   PERMANENT DISABILITY REPORT

Some of you may remember a few months back with your generous support the $3000 needed for the balance of his motorized medical assisted wheelchair  (almost $13,000) was successfully achieved, and he was to manage much better between his walker, and wheelchair.

             MOTORIZED WHEELCHAIR ARRIVAL

        ONSET OF TB AS PROGRESSION OF LUNG                                                    COLLAPSE

But this relief was short lived, as due to his condition attacking 1 organ at a time and limb at a time in a cycle, every time leaving him in a worse state than the last, he developed symptoms collapsing his left lung replicating T.B. with all its extreme impact.

             WEGENER'S  GRANULOMATOSIS 2014                                                    
        COMPLETE COLLAPSE LEFT LUNG 2016

That was not even the worst, as his body is replicating such a rare form of malignancy and any treatment procedures and radioactive process and intrusive investigations through multiple lumbar intrusive procedures, multiple endoscopy and gastroscopy, numerous x-rays, mri, cat scan, radioactive imaging , neurological studies, brain mapping etc leaves him in a distraught condition. yet this was not enough that now though he has been referred further by the Acute Ambulatory Care Unit to Genetic research facility, to Mac Master, Toronto General and Now due to Mount Sinai in Toronto, where his Gangrene related neurological and amputative procedures were proposed , during investigations revealed his left lung is collapsing rapidly and without which dealing with any amputative necessity was not possible, but without which the gangrene will only spread, making the so called lifelong degenerative terminal condition to be a very short life long term.

          REPORTING TO THE MINISTRY OF HEALTH

With this rarity of his condition he has been picked out by research centres with related pharmaceutical and related medical university internal medicine research department in the US, and the only option was to have a very intricate and rare stem cell regeneration done of lung tissue counter acting his condition, which would be created in the US. via tissue printing from donor selection with least rejection scenario and once ready to undergo a rare surgical procedure still only allowed in a research facility under research and experimentation, which in turn will not cure but at least ensure five years which in turn would allow the medical field to may develop further in related to this rare condition which may give him a chance t keep on fighting.

          HANDING OVER TO UNIVERSITY INTERNAL                               MEDICINE DEPT. IN U.S

This also has only been allowed after a long legal battle to get legal permission to undergo this experimentative procedure from the ministry of health with a part in their collaboration so that he may be allowed to undergo the procedure in a University internal medicine research department. Most of the time the medical team did not even permit him to go to court for the hearings, yet he fought through making this procedure permitted at research facilities.

MEDICAL LETTER OF LEAVE FOR COURT HEARING           ON THE ISSUE OF MEDICAL PERMISSION

The only thing being is that between the health care, and pharmaceutical - only 75% of the cost be covered , along with life on its own terms is hard enough for normal healthy people, yet alone with this condition and its related disabilities and medication expenses which is almost $500 every week.

              AVERAGE BI WEEKLY MEDICATION 

          AVERAGE BI WEEKLY MEDICATION COST

             AVERAGE MEDICAL COST EVERY 3 MONTHS

Even with all the above, he has not given up and still tries to do what he can from finding solace in his artwork (he is a substantially well known for his art) accompany to his family run place of business and help in the paperwork as  medically permissable and possible. He has also been medically informed not to ever be alone and or eat (even though now he can only consume blended or liquified meals) alone as any of the seizure he may get and or trachia collapse may be life threatening and or may cause body and or head injury during the process.

  IMPACT AND OR CONCUSSION AFTER SEIZURE
         IMPACT AND CONCUSSION AFTER SEIZURE

According to him the impossible battles are the ones that should absolutely be fought.

ENROUTE TO HOSPITAL - ONSET OF IMPACT VIA                                               GANGRENE
ENROUTE TO HOSPITAL - ONSET OF IMPACT VIA                                             GANGRENE

I sincerely hope that he gets a chance at this battle once again, and thank you to all that shall support him and for those who can't your blessings and good wishes shall be much appreciated as well.