I thought it was about time I blogged about something that’s incredibly important in my life. I havent really wanted to talk about it because then it doesn’t seem so bad? but if I don’t blog about it I feel like I’m making it out to be something im ashamed of, or embarrassed about, when in reality I don’t care what anyone thinks about it and I just don’t know how to talk about it.
For the last 6 months, my now 10 month old son has had a rash on his arms and legs, he has seen 45 dermatologists, 3 nurses and 5 doctors about this rash, yet not one person had a clue what it could be. For the last 2 months of so, I’ve been living with the fact they think my little boy is allergic to sunlight. They can’t confirm it yet as they said his condition is rare and possibly the only case in the UK.
At my last appointment with the dermatologist, after waiting 6 weeks for him to bother to get back in touch with me, he pretty much confirmed that it’s what Alfie has, he wouldn’t say that though.. not without the proof, but when I told him I was traveling to see my sister that evening for my nephews christening, he basically told me it wasn’t a good idea to have Alfie outside.
You see the thing is with Alfie’s rash, he doesn’t notice it, it doesn’t hurt or even itch, recently though Alfie’s skin has been blistering, just from the light coming through my venetian blinds. Making the dermatologist more concerned about Alfie and his skin.
I questioned him about the severity of this condition, he said he can’t tell me anything until its confirmed, I carried on asking anyway, asking about what happens with school, will he be allowed out’? etc. He replied, “in a mild condition a child would have to wear full length clothing, a hat and gloves every time they go out, in a worse situation the child wouldn’t be allowed out at all” he then followed that quickly up with “and Alfie’s case is rare” I took that how it sounded, that Alfie did have the condition and it was going to a worse situation than currently. He went on to tell me about how Alfie would never have a normal life because its genetic.
The main problem is the dermatologist who is working on Alfie’s case has now retired, meaning she is catching up with her patients 1 day a week, god knows how long we will have to wait, probably another 6 months, and no one is as qualified to deal with the case as she is.
The reality of it all is, my little innocent 10 month old boy, might never be allowed outside, he wont be allowed to look through the curtains, he has to wear sunscreen inside, thickly put on twice a day, he might never be allowed to go to school, to make mud pies in the garden, he wont be able to hang around with his friends, if he’s able to make friends, he wouldn’t be able to go to the park, he wont know what its like to play in the snow, leafs or rain, go swimming or even to play on his bike that he has in the garden. He would grow up constantly inside with the blinds shut.
If Alfie does have this condition, which I hope and pray he doesn’t, I will bring outdoors in, make sure we do lots of indoor gardening, I’ll buy a giant sand pit which in winter I will fill with snow for him and sand and water in the summer. I’ll show him snails and worms and my all time favourite, lady birds.
As absolutely heart breaking and as devastating as this all sounds, I am just so grateful to have such an amazing little boy. I think we all take simple things in life for granted. I am lucky, hes healthy, he has all of his limbs, hes growing great. My baby may not be able to have a normal life, but things could be a hell of a lot worse. I just hope that he doesn’t have this condition.
So when you go to sleep tonight please, pray for Alfie.