We recently were lucky enough to be able to share Freddie’s story in the media. We had an article in the local paper & a feature on the regional news & radio.
The reason behind this was that the 29th April is national undiagnosed children’s day and we wanted to do our bit to raise awareness. It’s a daunting experience sharing a story so personal with the media. Telling your story to a journalist who will then retell it to their audience is quite a scary situation to find yourself in. What if they don’t tell it properly? What if we end up coming across badly? What if they missed out vital parts of our story? All the questions that went through my head as I agreed to let people into my home to interview and record my family. Luckily the journalists did a great job of highlighting what being undiagnosed if all about. But there’s only so much time that can be spent telling one families story so obviously only a small part of your life can actually be told. So as grateful as I am for the time that has been spent by various people listening to Freddie’s story and helping us tell it to a wider audience I feel like I need to do this blog to fill in the gaps. To fill in the parts that weren’t mentioned.
Before we agreed to do the news feature we spoke to them about what kind of information they wanted on Freddie and this was the kind of things they wanted to know –
1. Tell me a bit about Freddie and how his condition affects him.
Freddie is 5 years old now and as soon as he was born we were aware something wasn’t quite right. He didn’t present as a typical child would, his facial features and the way his body looked were’t quite as you’d expect. A few hours after birth we were told he more than likely had some kind of syndrome and the doctors would perform some tests on Freddie to see what exactly was going on with him. And since that day we have no answers as to what this syndrome is. It stops him from being able to walk or talk, he has feeding issue with a feeding tube in his tummy, takes up to 14 medicines a day, is beginning to develop a curve in his spine, has epilepsy as well as a long long list of other health issues. He needs 24/7 care. He is unable to do any aspect of his care himself and relies solely upon us to help him and I suppose keep him alive.
2. How does not knowing what his condition is affect any treatment he can have and how you care for him.
Not knowing what Freddie has means we can only treat what we know about Freddie. We can treat his epilepsy with medicines and keep him growing by feeding him via his feeding tube but we can’t be prepared for anything that may come in the future. When you know what syndrome a child has you get some kind of idea as to what you can expect, they may develop heart issues so that can be closely monitored or they may have kidney or lung problems so these things can be kept an eye on so with Freddie we just aren’t prepared for what may happened.
You also find support harder to access as without a diagnosis theres often the assumption that it can’t be that serious, how can it be if theres no name for it? Every form you fill in the first question you will have to answer is what is the childs diagnosis, it can be very frustrating.
3. Is it difficult to plan for the future.
We have absolutely no idea what the future holds for Freddie. If he will walk or talk. If he will deteriorate or if sadly his live expectancy may be shorter than average. without a diagnosis we are very much in the dark as to what to expect from Freddie. And that’s scary. We assume he will for the rest of his life need 24/7 care so we plan our future based around that. We live in hope that we will see Freddie walk or for the day we hear him say mummy and daddy but we just have no idea if this will ever happen. We just hope he continues to be as happy and healthy as he can be.
4. how does it affect family life
Our family life is hugely affected by Freddie, possibly more so than we realise. Our lives have been this way for 5 years so we know no different anymore. It’s not until you see other families going on holiday or down the park that you realise these things are just becoming impossible for us. Sadly the world wasn’t built for disabled people and it isn’t until you’re on this journey that you actually realise this. You very rarely come across a park with equipment for disabled people or a toilet with adequate hoists and changing table for bigger children. So we struggle to go anywhere. In the past we’ve had days out and sadly we have had to change Freddie’s nappy on a dirty toilet floor, which no parent wants to do. We often find ourselves going out as half a family, one parent will stay home and care for Freddie while the other one takes out our other children. And thats hard, we want to be a family.
Having Freddie also greatly affects the time we get to spend with out other children. We try to give every one as much attention as we can but Freddie’s needs are so high that he has to come first. We can’t miss his medicines or leave him without food, so sadly our other children have had to learn to be a lot more patient than perhaps other children would be. We did use to have respite for Freddie that allowed us time to concentrate on Evie and casper but unfortunately for the last two months we have been without this and it isn’t looking like its being sorted anytime soon.
5. is there enough support for Freddie and yourselves and other families with children with undiagnosed condition
When your told you have a child with a syndrome the first thing you want is to know why and what this actually means. When you’re told there are no answers your massively scared. How can no-one know why my child is so ill? We were in and out of hospital constantly with over 15 doctors and therapists trying to help and treat Freddie but know one actually helped us deal with the lack of information. We were left scared and feeling isolated like I think any parent would. I tried to join various support groups for children with health issues but we never quite fit in, all these children had a diagnosis and I just couldn’t understand why we didn’t. Luckily I managed to find a support group called SWAN UK (syndromes without a name) They specialise in supporting families with children who have no diagnosis. Without the support from all the people in this group I honestly don’t think id of been able to deal with Freddie as well as I do now. They gave me the strength and help that I needed. Every parent who leaves the hospital being told their child is ill but the doctors aren’t sure why need to be told that there is support for you at SWAN UK. Having a disabled child is tough, but when you know your not alone and there are people to speak to it does help.