Monday, November 29, 2010

Appeal For Anton

 Update: 17.04.2012 Baby Anton has found his forever family!
An Appeal For Anton From Melissa

We all know that, maybe now more than ever, the UK is having to tighten it's belt. The government are making more cuts than Zorro did to maidens’ dresses, and public services have been locked in a vice-like grip, both of which do little for the happiness and healthiness of the population. And although I want to fight these problems, not just for myself, but for all of those who are affected by them, there are times when we are forced to take a step back and say “this could be much worse”.

Imagine being one of twins, born to a surrogate mother in Russia, while your biological parents wait for you in a foreign, affluent country. Now imagine that a photo of you and your twin is sent to your parents, and they see their baby boys for the first time. Imagine how you would feel if your parents, your flesh and blood, took your twin brother home, but never even held you, because you have a genetic skin disease and they didn’t like the look of you. That is what happened to baby Anton, and he is now languishing in a Russian orphanage, with no access to specialist care, dressings or feeds.

I was born with the same genetic skin blistering disease as Anton, called Epidermolysis Bullosa (EB), which causes extreme fragility of the skin and internal mucus membranes (it’s like having third degree burns every day, swallowing bleach, and often having the skin ripped off of your eyeballs). It affects every aspect of my life, and has meant lengthy spells in hospital, many bouts of painful surgery, and a daily five-hour treatment regimen. It has killed twenty-five of my friends, and many more acquaintances. But I can, and largely do, cope with EB, because I’m incredibly fortunate to have a wonderful family who are there to support me with all of the obstacles EB puts in my way.

The thought of little Anton, lying in his cot, staring at the same single toy he has had for all of his ten months is heartbreaking. When you are in physical pain, distraction is key, but he has no choice but to lay there, alone, acutely aware of every wound on his tiny body. The nurses at the orphanage do everything they can, but their time is stretched already. People with EB need extra nutrition, as our bodies are constantly working to heal our wounds, but from seeing Anton’s painfully thin arms and legs, it’s clear that this nutrition is not available to him. He has a naso-gastric tube inserted, which implies he, like me, has difficulty in swallowing; I would guess it takes too long for him to swallow his milk, and so tube feeding was the solution. This means that he does not receive even the basic physical contact of being fed, as most babies would be. I can’t describe how important the loving contact of my parents was, and still is, to me; when every part of your body hurts, feeling the touch of a loved one, and being reassured by it is crucial. Anton is missing that, and has little prospect of experiencing it, which leads me to worry about how that will effect his emotional and mental development.

His physical health is also in grave danger. Those of us with EB as severe as Anton’s need specialist dressings to heal wounds and reduce the chance of infections, as well as medications to guard against deterioration of the body from the inside - iron, zinc, anti-acids etc – as well as efficient pain relief to make life bearable. If Anton does not receive these essential provisions, his life will be cut tragically short. While the NHS may not be perfect, its existence prevents us from ever trying to survive in conditions such as those Anton is enduring.

While an American adoption agency is still trying to find Anton a home, we can help by making monetary donations (where possible), or even sending items out to Anton to let him know that he is loved. If you have children who have outgrown their cot toys, or even their soft clothes (big or rough seams are very damaging to EB skin), I am sure they would be welcomed.

We have a voice to speak out against what scares us, to ask for what we are being deprived of, and to challenge those who seek to abandon us to our fate. Anton has no voice, and has probably never spent enough time with an adult to learn how to speak. I cannot imagine being that isolated, whilst living in a body that is alive with agony and rot. That is why I have written this, and why the wonderful Bendy Girl is posting this. We want to give Anton a voice, and we hope that you will listen, so that we can all give him hope and some semblance of happiness.

If you can’t donate money or items, you could donate a few minutes of your time to tell Anton’s story to others. You never know what they might be inspired to do…

Thank you x

Footnote from BendyGirl: My blog readers are incredibly generous, £175 was donated via this blog to Melissa's appeal for DEBRA. This time we're asking for something a little different, although financial help is much needed for Anton. I know lots of my readers have business connections around the world. Does anyone have connections to Russia to organise getting donations of money, food and equipment to Anton? If you can help please contact myself (@BendyGirl) or Melissa (@Queeniejelly) on twitter or email me at and I will forward your messages to Melissa. Thank you so much, BendyGirl Xx

1 comment:

Arienette said...

Anton's story made me feel physically sick. As a mother, I can't even comprehend how Anton's 'parents' live with themselves.

Off now to see what I can do. What sort of clothes are best for him?

God, the thought of that poor baby, motionless and only experiencing the feeling of pain...A.B had reflux, which meant she was in constant pain for the first 6 months of her life, but at least I could hold her, sing to her, feed her for comfort, cry with her when nothing else worked, just let her know I was there. The idea of a child going through this without that is horrifying.