Family Stories

Content of the Family Stories and Blogs is the personal views and experiences of the authors and should not be read as action or advice from the Norrie Disease Foundation.

Slovakia Bound

By David Wilkins

It’s a time old cliché that a letter or an email can change your life. In my case the big change came by a Facebook post on a Norrie Support Group in June 2016. This post welcomed Tamara from Slovakia to our happy band. My first message to her was a general hello, and welcome to the group.  I’d never imagined that in March 2019, I would be sitting on a plane about to head for Slovakia to pay her family a visit.

Tamara and her husband Peter had a daughter an absolutely gorgeous baby called Julia, who has Norrie Disease. Upon getting to know her over Facebook, we soon were discussing what it was like to be a mum to a child with Norrie. Julia was their second baby but the first with Norrie, and as is so often the case the issue was that no support was being offered into what Julia might need and how her mum could motivate and play with her.

The only answer I could think of was Julia was still a baby, meaning you played with her like any other baby but stimulated her through sound -talk to her a lot, giving her lots of opportunity to encourage movement and noisy toys are a must. The good signs are she listens to a toys that play music or make an interesting sound, but always remember that even if she can’t see, she still a totally beautiful and ordinary baby (look at the pictures and you’ll see it’s true.)

Things developed later in the year. Tamara and Peter brought Julia to the UK for some treatment. So on a whim I asked if they would like me to visit. Following a chaotic trip to London involving a disappearing wallet, the loan of a credit card and the railway staff forgetting to put me on the right train, I made it. I spent the afternoon with an amazing couple and a totally adorable baby whom was asleep in my arms. She then decided when she was awake, that only mummy was allowed to hold her.

In all honesty I felt a fraud, I’m not a parent, and don’t know what parents need, but could assure them there was every reason to be confident.

Hearing could be an issue later on, and bringing her up wouldn’t be easy. But what did that change? There was every reason to believe she’d grow into a very intelligent, very talented and very good looking young lady who’d make them both very proud.

Almost two years later my plane touched down in Bratislava the capital of Slovakia. Tamara and Peter had very kindly offered invite me for a couple of days. So alone and with no supporter in tow, two sets of clothes and a toy for Julia (don’t forget that whatever you do!) I travelled to a part of Europe never seen before for two truly unforgettable days.

The atmosphere of Bratislava reminded me of ST Peter Port Guernsey; where I spent three happy months working for the BBC. It had the same small community feel to it, and that the city was a place where you could find most things just a few blocks away. In two days I fell in love with the potato pancakes with sour cream on them, thanks Peter. I think I ate about twelve of them, and had the famous Slovakian sausages with mustard for breakfast.

Day 2 included a very interesting afternoon.

I was there of course to see Peter, Tamara and Julia. But on Saturday afternoon Tamara had arranged for me to speak to a group of families from Slovakia. Their kids had Norrie too, and Tamara had got them all together so I could tell my story (somehow it kept them awake) and to answer some questions. I really enjoyed the day, although poor Tamara had to translate what I said into Slovakian, which was not easy for her. She had to bring in Julia’s godfather Michael to lend a hand.

Again, I felt a bit inadequate, but I did say I wanted to be a Norrie ambassador and the families all seemed to really like having me there for a chat. The question I got most frequently was “why won’t my baby go to sleep.” Ah, do I hear an understanding murmur for all parents reading this? Thought so, because this seems to be a problem the world over. And the answer is that you can’t eliminate this problem completely, because as the baby has no light perception they don’t shut down at night. The best solution is a regular routine and bed time, and if that isn’t working, use melatonin as well.

They asked me some really good questions, and came across as a wonderful group who’d thought carefully about what did and didn’t work. It’s also great that although they were not given much support by authorities in Slovakia they weren’t prepared to wait for that to start, but got going themselves. Working to make sure their children go to normal schools and integrate with sighted kids from an early age. But being aware that often because teachers can be or uninformed, they need to do a lot of the pioneering work themselves.

They are very interested in hearing from or teaming up with the Norrie Disease Foundation here in the UK.

Julia playing with the toy I brought for her. After an afternoon like that, no wonder we all needed a nip of Slovakian plum brandy, and it’s quite nice stuff.  And what of Julia I hear someone ask?  She’s still a very adorable baby, who’s into experiencing new things. She adored her new toy (the image shows Julia playing with the toy I brought for her. She is sitting on her mums lap exploring the bells on the toy and I’m listening next to her)

But Julia still refused to let me near her.  Each time I tried, she instantly wanted mum back.  Proof that Julia will be a very bright kid having worked out mum is more interesting than me.  indeed I leave you with the picture of Julia on my lap, just before she changed her mind. Cheeky girl.  

PS, since writing Tamara and Peter took Julia to the US for eye surgery.  To their delighted it turns out that Julia has light perception in both eyes.  She can now say hello, goodbye, mum and dad. She  also has a swing (she loves to swing) and is trying to sing as well.

 May we see them in the UK very soon.  

Cam

Cameron’s smile – my wonderful new bed

I came home from school to find my new bed has been delivered.

I used to have a Kinderkey cot, with 6 foot enclosed padded sides, but due to my development over the past year, we decided I was now ready for a high low floor bed.

This will help my independence so much, being able to get in and out of bed all by myself, and being able to play and chill out in my bedroom freely.

The bed goes right down to the floor for sleeping, and it also raises and tilts for changing and feeding.

We will also be adapting my bedroom door and installing video monitors to make it as safe as possible for me in the night.

I love my new bedroom so much  💙

I hope I manage a good nights sleep in my new bed this evening.