Amirah's Story - Not Just Eczema
My beautiful little girl was born August 2011, at four months of age she had her first taste of food. That was the first time we met her shadow.
A small circular patch of fierce eczema appeared, replacing her delicate baby soft skin. It was ‘just eczema’. That eczema would never be ‘just’ to us, it was cruel. No matter how hard we tried, or prayed nor what cream we slathered on this time, it still brought misery and tiredness to those beautiful big brown eyes exhausted from restless sleep, fighting the relentless itch and pain. Oh the pain, which had us both sobbing together in the darkness of the night.
The eczema was cruel, but the ignorance that followed weighed down our guilt; we were helpless, trapped by this spreading menace. At four months old a mother at baby weigh-in told me it was “a shame, because she would be such a beautiful baby if it wasn’t for that!, I wanted to tell her “shut up!” tell her that beauty is not skin-deep. Tell her how proud I was of my daughters resilience and determination, but, I couldn’t, so worn-down and tired from our gruelling daily battle, I scooped my baby up in my arms, went home, and I cried.
Everywhere we turned, people wanted to know; ‘what had we done to our baby?’, ‘why couldn’t we fix it?’, ‘why wouldn’t we try the 101st cream handed to us?’ A manager publically accosted us in a supermarket, exclaiming loudly, drawing attention on my baby, personifying the shame we should be feeling, again we went home and cried.
We were desperate for help, desperate for solutions. Throughout the rollercoaster madness of flare-ups and infection we saw countless GPs, nurses, paediatricians, all of them desperate to help. One nurse, in awe of my little girl, called us off-duty to tell us about the latest cream that could be our cure. So broke from constant arrangements to make GP appointments, out of hours and hospital trips, we couldn’t afford it anyway. The costs mounted up; when the car broke we had no money to fix it, so we gave it up. Eczema was costing us everything; finances, emotions, relationships, friends, it nearly lost my partner his job too.
We were living in a bubble; determined to protect our daughter, trying our best to be there for her, but also her brother, a forgotten victim in this web of eczema and allergy. When he got chickenpox aged 3, I couldn’t give him a mummy cuddle, because once again my feisty daughter was in hospital fighting yet another skin infection. Being separated was hard on us all, but hardest for brother and sister unable to comprehend ‘why?’.
That time when we left the hospital, the ignorant taxi driver handed me a rag, instructing me to wipe her sore face, refused to move until I wiped “dirt off her face”. It wasn’t dirt, it was eczema; we went home, we cried.
There is no doubt that those we met in primary care wanted to help, at times you could see our frustration mirrored on their faces, but with so little understanding of allergy, my baby was condemned to a seemingly endless cycle of pain and frustration.
Thankfully fate stepped in; a chance meeting with a band of allergy angels resulted in an allergy referral. It was our golden ticket, which got us the right help, the right support from various consultants; this helped us slowly remove the mask. Our shadow is still there, but I am so grateful we now have the right tools to manage it.
Please don’t breathe a sigh of relief that our story has a happy ending. Please know that there are many more out there still consumed by an unbreakable cycle of scratch and itch, with so many selling miracle cures, but nobody with the time to sit and listen. There is no good reason why our children should suffer. If your story echoes ours, please demand better access to the allergy care that you deserve. I know it is not simple, I know it is a mountain of a task for your weary eyes, but persevere, be strong, your little one deserves it!
Written by Kerry Azhar; Mummy to Amirah.
Amirah is allergic to milk, eggs, nuts, sesame seeds, sunflower seeds, cats, rabbits and other small furries.
If this story has touched you, you can help to support other people going through similar experiences by making a donation to Allergy UK. Just a small amount will help us to continue to support those with allergy and help sufferers such as Amirah.
Amirah's Story Continued...
Amirah and her mum offered to be a case study at the 2016 Allergy UK Hero Awards, shining the light on the reality of living with severe allergies.