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All posts for the month April, 2016

Undiagnosed day 2016

Published April 28, 2016 by swanfreddie

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.
13043310_918346904944697_8104755706952899633_nThe 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.

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Money, money, money

Published April 16, 2016 by swanfreddie

Last week we tried Freddie out on a bike. It’s a specialist trike designed especially for children who have additional needs and require extra support. We tried him on one a few years ago when he was 2 but decided to not purchase one and to wait until Freddie was slightly older. So Freddie was measured and the bike was set up to give Freddie enough support so he was comfortable but also they made sure he didn’t have too much support so his muscle would be working as he rode. Freddie loved it! We loved it. We were excited by the prospect of our son finally getting his first bike. But then the quote came through for it, and this is where things get so frustrating. The quote is £2440. Now we knew it would be expensive, we’ve lived in the disabled world for long enough to know an extra 0 gets added on to the end of every product.
We were hoping to get the trike for Freddie’s birthday, but with 6 weeks to go until he turns 6!! this is looking unlikely. It’s not as simple as it is to buy for Freddie as it is our other children. Freddie sister Evie recently turned 7. Now she was easy to buy for she knew exactly what she wanted and other than hitting my bank balance by a few hundred pounds it was easy. With Freddie we can’t just do this. We can’t go to the toy shop & buy Freddie’s bike. We can’t do anything for Freddie anymore without the help of others.

Freddie is in desperate need of a new carseat. Unfortunately standard car seats aren’t suitable. So in order for us to equipped Freddie out with the right kind of car seat we have to have him assessed, which takes time to sort. Then find the £2000 required to pay for it. Now i’m not in a financial position to pay out for things like this. So we have to approach different charities to ask for help. And this is time consuming. It can take months to sort by the time you have provided the evidence they require to prove your child is disabled, then you have to prove financially your not able to contribute towards the costs then lastly you have to have a supporting letter from a medical professional to agree that this product is required and suitable for Freddie.

Freddie has also outgrown his current pushchair. We are in the middle of trying to sort a new one. But again this ends up massively out of our control. We have to be referred to wheelchair services who then assess Freddie and advise what they think is suitable. Now we massively appreciate the NHS, they have done ALOT for us, but they just don’t have the budgets needed to offer the equipment that children need. We are possibly looking at ending up in a situation where they can’t offer Freddie the right kind of wheelchair he requires, deserves and needs so we may end up having to go down the self funding route again. Which will mean approaching more charities to help us pay to get our son out of the house.

The next item is Freddie’s indoor chair. Again he has outgrown this and the wheels on the base of the chair are not suitable. We are told a new chair has been ordered but weeks later we are waiting on it to be delivered. Which isn’t a huge deal but it adds to the frustration that you can’t cater yourself for your own child’s needs. You can’t just go out shopping to buy him a chair like we do for our other children. We are always relying on other people to help us.

Realistically we are looking at over £10k to provide Freddie with the equipment he needs. Likelihood is he may not get his bike for his birthday. We have to fund the equipment he needs first and the carseat is our main focus right now. It’s incredibly hard to watch your child go though so much and then not be able to provide them with things to help make there life’s more fulfilling. In the past 6 weeks alone he’s had 2 operations and 2 chest infections. Now it’s time to see him smile, and he didn’t half smile on his bike.
I’m aware this post isn’t the happiest! It’s just reality for us right now. But i’ll leave you with a few photos of Freddie on his bike to cheer the post up 🙂

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