Nicola Lewis is a carer for her two daughters, Alana and Ella, 16 years old and 5 years old. They both have foetal valproate syndrome. “It's caused, unfortunately, by a medication that I take for epilepsy. Nobody told me about it at the time of my pregnancies, or prior to them. It has caused multiple complex difficulties, for the girls. They’re affected in different ways. It's a developmental condition more than anything; at each developmental stage, you will see new things coming to life. It's a learning curve, basically learning as we go along.”
Nikki describes living with the girls as being like a roller coaster at times. Their behaviours can change instantly. “You get up in the morning and you just don't know what to expect. The children can be literally Jekyll and Hyde, so one minute they're happy, the next minute, they can fly off the handle, they’re angels and demons. The hardest part about it is they don't understand, they have understanding difficulties. Trying to get across to them what you mean is very, very hard. On top of this, the girls have a lot of coping mechanisms. They're able to hide a lot of things. We've got to deal with the children in a specific way, but then we've got to deal with the outside world to help the children. We're dealing with both daily.”
Getting the right support in place is a constant battle for the family. It has been this way since Alana was born. “We have been called liars and over-protective parents. We've been discharged from departments because they say there is nothing wrong with the girls. We have fought for everything, especially for the eldest for her education.”
Having to fight for support and understanding from professionals only exacerbates the family’s worry and stress during the cost-of-living crisis. The family are feeling the squeeze with the crisis, especially with the small regular increases.
On top of the cost of food, clothing is a huge expense for the family. Continual growth spurts cause the need for new clothes, including the costly school uniform. Shoes are another big expense for both girls as they must be fitted. “The eldest has been diagnosed with hypermobility and the youngest has got mobility issues; she's constantly falling over, so she needs extra support around the shoes. They've both got awkward feet. We can't just go and buy them from cheaper places, unfortunately it’s mainly Clarks.” The costs all add up and are a huge expense for the family.
“The eldest has got a condition that is affecting her body odour, we found that a lot of children who have this condition suffer from body odour. The sweat gets into her clothing, and we're washing her clothes constantly, we even scrub it with washing liquid. On average we wash the clothes three times over to get the body odour out of it. It’s wear and tear on the washing machine, the electricity and the washing gel. We can't use a bog-standard gel, it's got to be a specific brand. Both girls have pica and it can be a health risk and dangerous if we can’t provide safe sensory things.”
It’s little things like this that add up and strain the finances during this crisis.
“I've got to pay for fuel for my car, plus there’s the wear and tear on the car. It's been in and out of the garage because it's not a new car, so it's getting to that stage now. We've got to pay for the extracurricular activities that were advised by physiotherapists due to the hypermobility, to encourage strength and tone within the muscles and the joints. Without that, we will be back in a wheelchair with the eldest. The list just goes on and on. We use a lot of gas to keep the heating going in the house because the house that we've been provided with suffers from mould. Some parts of it have been treated already, but unfortunately, it's coming back. If you've got washing hanging around in the house, then obviously we've got all the moisture, so we've got the heating constantly on. We've got a tumble dryer that we have to use because we've got so much washing going through; that is a huge cost to the already rocketing electricity bills. The list just goes on and on and on.” All of these costs add up for the family and mean sacrifices in other areas, but how can you cut something that is needed and not just an extravagance?
“It's stress, stress and strain, we question every choice now, can we do this, can we not? We have to cut back. It's horrible for everybody, I'm not saying we're more important. However, the needs of the disabled, and especially someone with a rare disease are extremely important, you have no choice, there is no option to cut back. Things have got to be done. You have got hospital appointments to get to it's not just a case of getting back into school. It's not just a case of going and visiting relatives and having days out. We do need to have days out, we need to get the girls out of the house. The behaviour is just absolutely astronomical if they are cooped up. It's just frustration.”
Nikki finds the lack of support hard and harder still is knowing where to go for help or advice. Just who to reach out to? “No one gives you advice now, you have to try and find out things, but who do you turn to? Even some of the support organisations, they don't know where you can go. It's a case of you going out and trying to find something. But when you get mentally and physically drained you can't. It's so hard to do. You're already fighting to keep your family going. You're fighting to keep your children going. You then must find the time and find that mental energy to go out and dig somewhere else, but where? You don't even know where to start? We just need support from somewhere. And I don't know why it's so hard.”
Being signposted to help would be a huge relief to Nikki and her family, who are already struggling to deal with the day-to-day lives of the girls and their conditions. At present Nikki finds some support from peer groups but it hasn’t always been there and in the past, “It's so important. It really, really is to have help. If you've got a support network, you feel like you're not alone. You're not the only one that's going through this and you're not imagining things. Without the support it's horrendous. You go down mentally, you know, you go down physically, your health is interlinked. If you can't deal with things, if you can't look after yourself, how'd you look after your children?” Despite the peer support groups, the family need more help and support starting with clear advice.
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Fetal valproate syndrome (FVS)
Fetal valproate syndrome (FVS) is a rare condition that is caused by exposure of the unborn baby to valproic acid or sodium valproate (VPA) during the first three months of pregnancy (the first trimester). VPA is a medication used to treat certain types of seizures (epilepsy), bipolar disorder and migraines.
To learn more about fetal valproate syndrome, click here.
Source: https://rarediseases.org