I have just produced a portrait for a global rare disease art exhibition.
My idea was to incorporate the angel wings / boxing glove torso i designed in to it.
It represents the fight for flight stress response Molly never had.
Molly has had the rare life threatening condition Hypopituritsm with adrenal insufficiency since she was born.
The simple fact was we could have lost her to it at any time. No one would have known a simple cortisol injection would
have saved her.
I took the portrait from a photograph of molly age 2. She had just come out of hospital with pneumonia.
I began by painting molly's face.
Remembering all of her
little features and beautiful baby cheeks emotions started flying back. Regrets, sadness and shock at the fact my baby girl could have died at any point in her first 14 years.
I remembered the little dress she was wearing and the curls in her hair.
which took me ages to detangle because moll felt pain or discomfort much more than anyone.
The real point which hit me the hardest was painting the actual tears in her eyes. For every tear she has ever cried i feel myself responsible. I had looked
at this photo on the wall a million times. Id never seen the tears before.
Now i was actually painting them and i felt so so sad. My poor little girl she had a growth hormone deficiency. poor thyroid function and very low cortisol.
all of these things been discovered. Had she been medicated those feeling unwell so often tears would have been much much less.
Molly thinks she is weak. She's 17 now and gets so frustrated when she is in pain and feels so poorly.
She has battled through all of primary school never once giving up and loosing the will to want to be at school. She tried ballet with chronic asthma and brownies and never once did not want to go. She unicycled. And when she was well she didn't stop
trying to do all of the things she wanted.
Molly battled her way through feeling poorly, to the point when she would just collapse in a heap on her desk at school and go in to a deep sleep. This happened a lot. We never knew how ill molly was. She could
be running about and Suddenly she would stop.
The teacher would phone id take her to hospital and she would have pneumonia.
The tests she has been through i could loose count.
I used to say to people when the nurses were putting needles in her hands. ' how does this make a small child feel? They dont know or understand its for those own good. And there was i appearing to my baby to let them do this.
So the years went on 'she goes down quickly' was added. To her drs notes numerous times.
Molly fought against all the odds every time she got poorly. She had NO natural mechanisms inside her to make herself better.
She just scrabbled through each time. Nearly always ending up in hospital on iv antibiotics. The closest call i believe molly had was when she was 9 and had appendicitis. She had previously that month been tested for Addison's disease.
This was negative. Although effectively she DID have Addison's. Only in a different form. Her adrenal glands work but her brain does not instruct them to.
Firstly being the fighter she
was the assesment surgeon told molly to jump up and down. Although the pain was immense molly did jump up and down because this is her! She will never be defeated.
Then the surgeon made a huge mistake. Because molly jumped up and down
she said. 'Oh well, no one with an appendicitis can jump up and down the pain would not let them.'
Molly was left on the ward. With no consideration for the potential deathly Addisons complication and with the surgeons opinion that she was
Her appendix erupted in the early hours of the morning. I can only thank again her own body for cocooning her appendix in a massive wall of fat. This prevented the poisoning of
all of her organs.
Molly was rushed to surgery. And only saved that day i believe, by the massive dose of steroid (cortisol) she was given because of her chronic asthma. (Protocol for anyone with adrenal insufficiency / addisons is to give
cortisol cover in any operation. This prevents the body going in to shock / adrenal crises and death.)
Molly was ill for weeks after this. The surgeon said in his career he had never come across the
body cocooning the burst organ in this way. protecting itself from serious peritonitis. She did have pockets of poison all over her body from the eruption but mainly it was contained in the cocoon.
Molly was very poorly following
the operation no one could make out why she was so ill. She even asked me why the doctors didn't know what was wrong with her. SHE HAD ADRENAL INNSUFFICIENCY!! She needed cortisol.
Finally after bucket
loads of antibiotics she was discharged from hospital. moll slept in a toddler bed with us in our room for the next 4 weeks. (She was tiny).
she would hallucinate and be terrified of big spiders on the walls. they were not there. And
one night she thought her hands were big gigantis floppy rubber hands. She was screaming at them and waving them about. . it was terrifying for her.
The drs put it down to effects from the drugs and anesthetic but we now know it was
due to low cortisol. She was still in grave danger but we did not know.
The angel wings in my painting then took on a different meaning to me. I truly believe that for 14 years Molly was protected
by something much bigger than we know.
Now although her angel is still there (i believe him to be my brother)
I'm taking over the protection in a real world kind of sense.
That must have been hard work for 14 years! I know it was this end.
So now when Moll looks at herself as being chronicly ill, tired , weak and no good i can show her this and say 'NO' You are the strongest person i know!
Your battle to live. To run, to jump, to eagerly learn everything you have has been 1000 times harder than your average peer could ever imagine ! You have defied all odds to be here! So no !! You are not weak you are strong
you are the terminator! You will always fight for your flight ! And now we know everything we can help you do it.