One of the mums on my group is by far the one who has been judged maybe more so than any. Why you may ask? Let me tell you all about my dear friend Steph.
Steph has two little boys, Harry & Cody and because the two boys suffer from the same rare and painful disease that causes their skin to blister it gives others the opinion that mum and dad are to blame. They have had to put up with whispering and pointing and other mums pulling their own children away from her babies.
The young Poole couple’s world was turned upside down when first-born Harry, now two, was diagnosed with Epidermolysis Bullosa.
When Steph, 20, fell pregnant again, doctors warned there was a one-in-four chance this baby would also have the condition – which normally affects one in 17,000 babies. The loving parents decided against an antenatal test, fearing it could lead to a miscarriage.
It became clear that little Cody, now five weeks old, had the same junctional EB – the worst type – just two days after his birth.
When Steph fell pregnant with Cody the judgement started yet again, why would a mother even risk having another baby?
Dad Chris, 24, said: “We really wanted to have another child that didn’t have EB. So we weighed up the risk.
“We were really excited but anxious throughout the whole pregnancy.
“Seeing Cody’s blisters was absolutely gutting.
Both Steph’s little boys have lost their nails and are kept wrapped up to protect their skin, which is so delicate because of a missing protein.
Because of people’s reactions, they have only been out twice as a family since Cody was born. “Days out are difficult,” Chris said. “We’d love to be able to go to the Sealife Centre, or to see a show or pantomime. Even the day-to-day things like going shopping have become impossible.”
Some parents think it’s contagious and pull their children away, while others assume Chris and Steph are to blame.
This is disgusting behaviour from others, perhaps if we even knew what Epidermolysis Bullosa was, we would know what we were judging this mum on and what are we judging her on, the desire to have another baby? Is it not her and her partner’s choice to decide whether to have another child, they are the ones who know the risks?
Is it anything to do with anyone else, do any of us really know if a child we bring into this world with be born 100% healthy?
Do we not all take that risk when we decide to have our own children?
So there was a one in four chance that Cody would also have Epidermolysis Bullosa, there was also a chance he would not.
I say my children are worth every risk in the world2” Chris said: “We’ve been in hospital and heard a woman saying ‘You’ll never guess what these people have done to their baby’.
“It’s not very nice being doubted as a parent. We’re constantly supporting Harry as best we can and other people just give us grief.”
Steph & Chris are amazing parents, who have two very beautiful little boys; those boys are part of The Supermum family and I for one am very proud to know them.
You can read the full article on Harry & Cody here
About The Real Supermum
that is absolutely terrible “? sorry but at the end of the day there children in my opinion all children are gawjus wether they have a condition or not !! its bad the parents have been judged for having other children yes there was a chance the baby would have the same but they are giving a person life surely that means more . sending big hugs to a very brave family xxx
I’ve just been shopping in sainsbury’s and there was someone collecting money to help children with this very condition (seriously wierd coincidence there).
Children with conditions that affect their day to day lives should be encouraged to enjoy life, not be pushed to the outside just because of people’s prejudice (which is often caused by not understanding what the situation/condition is).
Aww bless them, I hate it when people judge, Catlyn suffers from pysrisis and it covered her face last summer, it looked like she was sunburt. A mum at surestart actually took t upon herself to scream at me about allowng my daughter to get sunburnt. I tred to explain what it was but she kept screaming until the HV came over (at my surestart they have stay and play at the same tme as weigh in) and explained to the screaming mother that I was infact telling the truth, she just went ‘oh’ and walked off. Luckilly that only happened once as It cleared up and *touch wood* has never been back, I can’t imagine what it’d be like to deal with that kind of reaction every day. All I can say is chin up and keep on trucking. As long as your babies are loved and cared for who cares, and narrow minded simpletons need to jog on xx
I really hate people that judge before fully understanding. I have a 1yr old with cystic fibrosis, we also hold the same 1 in 4 chance of having another with cf. We are currently applying for genetic screening. It’s a personal opinion and others have been very opinionated that I am playing god etc but we all have our own right to decide how we live our lives. I think u are all amazing and should go out for your days out with your head held high, I challenge any one else to have a daily routine like u do. Good luck for the future x
That’s terrible behaviour it reall pees me off how some people can be so judgemental!!x
This breaks my heart to read! I too have to deal with the points, the staring, the whispers on my daughters condition that has left her arm scared & deformed & the adults are the worst for the judging! The worst being where a lady went right in my daughters face & said out loud ‘Now what has your silly mummy been doing to you, did she have an accident’ ..that comment has stuck with my forever! People can be so cruel! I wish you & your beautiful boys the best for the future..and I hope there comes a time when you can step out the house judgement & worry free! xxx
I honestly had never heard of the condition, so thankyou for making me aware of it. For people to automatically assume that it is something that has been done to the children is outrageous. I personally think you are doing a brilliant job as parents and you sound very strong. It must be hard and I hope that we offer support to you when you extra strength to get through the difficult days xx
what gives anybody the right to make assumptions like they do? I thinks it disgusting behaviour especially from an adult, kids are abit different, they dont really understand but as a parent they should say theres nothing wrong with that boy/girl…nasty world today xx
thats, horrid, so sad that the reactions of others have made you feel this way.
People are so judgemental. Sorry that they make you feel that way.
Hope things are better for you now xx
i hate how judgemental people are, so quick to assume the parents are to blame, hope things are better for you all now xx