Laura Baines is the mother of seven children between the ages of eight and 25. Her 15-year-old son Louie suffers from cri-du-chat syndrome, a rare disease resulting from a chromosomal condition where a piece of chromosome 5 is missing. The syndrome ranges in its severity, but Louie is at the high end. He cannot walk and is fed through a peg in his stomach, but Laura says he is a “bundle of laughs and mischief.”
Because of his condition and her own fibromyalgia and asthma, Laura has been shielding since the start of the pandemic, home schooling the youngest four children, including Louie, for more than two years.
In this interview, Laura gives her testimony to the Global Workers Inquest into the COVID-19 Pandemic.
Can you tell the Global Workers Inquest about Louie’s condition and how it impacts him and the family?
Louie’s cri-du-chat syndrome is quite severe, but we have always treated him like our other children. We’ve had to fight every step of the way though for help. If it wasn’t for the midwife I had, I don’t know what we would have done. Normally children with this syndrome are identified because of their failure to thrive but my son was an average, normal weight. I knew something was wrong though, and I kept saying so. She could see it too so pushed for more blood tests and it came back showing that he had it.
I was so relieved to know that what was wrong with him had a name. At the time, however, there was little support available. We were given a single sheet of paper with the name of an Australian support group.
Because of his condition, I’m used to having to deal with seasonal respiratory syncytial virus (RSV), flu, chest infections, pneumonias, pleurisy and general viruses and I’ve followed them all with interest and concern. I have chronic asthma and it became a bigger concern obviously after we had Louie.
We were trained by his respiratory team in northern England to keep him away from anyone with the slightest sniffle. We’ve seen him go from catching a sibling’s cold to being on standby for a transfer to the children's hospital to be intubated as the high dependency unit couldn’t help anymore. So, we have been extremely careful around COVID.
What have the last two years been like for you? What’s your estimation of the government’s “herd immunity” strategy and its reasons?
When we first started hearing reports about China at the start of 2020 and then seeing they were already wearing masks, sanitising and locking down, I kept wondering why we were doing nothing in this country. I knew it was airborne as a cough was listed in symptoms so that told me it was going to spread through the air.
We knew the government were stalling so we had to act. I went into Warrior Mama mode as I call it. And this hasn’t stopped. I began looking for alternative news myself and started stocking up on masks, etc. We already run a tight infection control regime with Louie’s care needs and have since his birth.
Louie has no voice at all, and I knew the sick and disabled were always pushed to one side, so the only thing to do is make sure he doesn’t get it. I was afraid, but not irrationally. It’s more like I know I can do this, it’s literally what we've been doing for 15 years for Louie. Infection control for us is a way of life because we live with someone who is immunocompromised.
We got to the first week of March 2020 and, after discussing with my husband, we decided to pull the children out of school. We discussed it with each school. Each school agreed and consented.
At every stage those who are meant to be in control have failed. When they found out about COVID, they could have stopped all flights etc straight away and had controls. Once it is contained, then it’s a question of testing and mitigations. That’s just basic hygiene control. It’s what they do on a farm with an outbreak of foot and mouth, for example.
I say the government has failed but really it’s done exactly what it set out to. Disaster capitalism happens in disasters. If you choose not to mitigate against the said disaster, then you can prolong the time while you capitalise on it.
The government saw an opportunity in this pandemic plain and simple. An opportunity to make money. Not for “Joe Public.” For those who were already wealthy. The millions they have given their donors/friends for fake PPE [personal protective equipment] etc could have been spent on implementing measures to eradicate it.
They knew full well people have family sick and people were dying. This is my family, and we all want to live but we have a government that is using eugenics as they feel fit. They are doing nothing at all to protect us from an airborne virus that can kill us. We can’t just shrug this off as we have underlying conditions that would leave us fighting for our lives if we caught it.
I’ve had to argue for Louie’s vaccines. The first, due to his age, was off licence and the second took ages to approve. What chance does he have when they have stopped masks, testing and isolation?
Recently the school nurse came to weigh Louie. She does this monthly because of his failure to thrive, despite being fed through a peg directly into his tummy. After I got a phone call to tell me she had tested positive for COVID! We were told that the only reason we were informed is because of the nurses themselves. The school said they are under no obligation to inform us! Testing is optional for staff at the school and there is no masking, no mitigations. This is a special school with sick children that have complex medical needs like Louie. Some are even worse off.
Louie physically cannot wear a mask so it’s up to those who are responsible for his health and wellbeing to do so but that’s not the case. That’s why we’ve always insisted that anyone who comes through our door wears an FFP2—no excuses. The rooms are well ventilated, and we have HEPA filters.
Parents like Sarah Paxman are being viciously persecuted by the courts for keeping their children out of COVID infested schools. There’s now a surge in school absenteeism again as children and staff are falling sick. What’s been your experience?
When I saw in the JCVI [Joint Committee on Vaccination and Immunisation] minutes that they were going to use children to spread COVID through close contact in school, I knew I’d made the right decision to involuntarily home school.
I’ve spoken to others in similar situations. Daniella Modos-Cutter is one because of her work collating school cases. I got in contact with her when I saw Cornwall was never on this list because they were trying to keep it under the radar. I’ve spoken to Sarah Paxman too, and she told me about her submission to the Global Workers’ Inquest. I’ve also spoken to Emmy Kelly from Fighting for Vulnerable Lives.
We’ve been home schooling the four youngest, including Louie, since this started. We’ve had little help. The primary school has sent bits and bats. I’ve been working through the Twinkle curriculum teaching them. My youngest daughter’s teacher has been the best, involving her most weeks in 15-minute sessions on TEAMS. But for my nine-year old son it’s only in the last fortnight or so that his teacher messaged about a TEAMS meeting. The problem is he is very sensitive and when these meetings haven’t happened before he has felt very let down.
The primary headteacher won’t even discuss how she feels about children in her care continually being absent with COVID. She says it’s a matter for those families affected. I have letters stating no mitigations can or will be used should my children go back.
At Louie’s special school, his teacher had it. When I eventually found out and challenged them about lack of masks but wanting him in, they said, “we’re following government guidance.” Their COVID-19 Risk Assessment covering the start of this year doesn’t include airborne spread once, so it’s not mitigated for.
Louie’s head came to our home for an Ed Planning meeting with the EWO [Education Welfare Officer] from the local authority who have said that missing school is detrimental to his wellbeing. I made it clear whilst there were no protections, he would not enter the building as he cannot physically wear a mask to protect himself because he doesn’t have the mental capacity to understand. He also has Autism Spectrum Disorder and Sensory Processing Disorder so can’t tolerate things on his skin. He won’t even keep his glasses on. She said that she would look into HEPA filters, but I’ve heard nothing since.
My 12-year-old is at high school. The friends he chats to daily over PlayStation report that they have had COVID two or three times and that they are having different teachers covering lessons as staff are absent with it regularly.
Now we’ve received final warnings from the high school and the primary. The primary school want social services to make an evaluation to order the children to attend school. This is madness. The non-attendance has nothing to do with safeguarding issues or such. What are they going to do? Jail me? I don’t have the money to pay any fines.
In addition to a pandemic that is again raging out of control, workers around the world are hit with a “cost of living” crisis. That’s how its termed in the media but more properly it’s a “cost of keeping the rich” crisis. How is this affecting you?
We face homelessness. I was due in court last month but there was a problem with the paperwork, so it has been delayed. I can’t afford the £400 to go to court so I wasn’t there. This is the third time we’ve gone to court over our housing situation. The problem is that the rent on our house is more than double what we get in housing benefit. Cornwall is a tourist hotspot and those that can afford it have second homes here, so the price of housing is very expensive.
This started before COVID. As Louie got older and his needs became more apparent it was impossible for him to share a room. We were put in contact with the council and were on the list for a bigger house but there weren’t any. We were told it would be quicker if we found a private rental with a landlord who would allow adaptations.
We’ve had no end of problems. We have got houses and then the landlord has said we can’t make the needed adaptations. Then there’s been the changes made by local authorities to certain benefits, such as cutting the housing allowance for a four-bedroom house from £795 per month to £620. We lost one place because we couldn’t afford the extra and the landlord wouldn’t reduce the rent because they make more money renting rooms separately to students than housing a family.
We even ended up begging the church hall where my children’s school was if we could use the empty house that was attached to it but it was the same scenario all over again: plans are drawn up and then the church starts thinking about money rather than about us living in their damp unsuitable hovel that was desperate for repairs never mind adaptations. So, they wanted us out.
The landlord where we are currently has been supportive. He has been trying to get the help we need. The council could make a discretionary award to make up the difference in housing costs, but it won’t. So, our arrears have climbed—currently estimated at £20,000.
I’ve been rung by the council’s temporary accommodation team who basically want to put eight of us in a B&B. But Louie and I need adaptations for our housing because we’re physically disabled. Louie for example has a 7-foot bespoke bed. It would have to be lifted, dismantled and reassembled to fit wherever we are placed, and all the equipment he needs would have to be moved the exact day.
Then there’s the fact that we’d be at risk in a shared space as we would have no control over who is entering with COVID. That’s the very reason I’m involuntarily home schooling in the first place. In addition to that, how am I meant to home school four children in such a space?
I explained the situation to the housing worker on the phone and she was nearly crying. She kept apologising and I told her it wasn’t her fault, that she should take it back to management as they’re the ones doing this.
We’ve been working with housing for over three years to find a solution. We’re entitled to a five-bed property, and it would have to have space to build on the ground floor and add a wet room. My previous housing officer sent an email before he left the job that this was necessary, or we would be in crisis. The children’s disability social worker has said the same.
Five-bed homes are never available through the council so we’ve been put in a situation where we can only bid on a four-bed house, but the computer system won’t allow us to do this as we have a five-bed need! That’s why our previous Housing Solutions officer was adding a bid for us manually. The council know all about this but have closed our relocation case so we can’t bid at all as there’s no one to do it. That was also done without consultation, which is unlawful.
Previously we were told that the council were working with developers on a house in the planning stage for us. It easier to make the needed adaptations in the planning stage. Then we were told this wasn’t going ahead because the developers hadn’t been given the necessary grants. In my opinion, the whole thing is so corrupt.
In addition to the stress of potential homelessness, we’re struggling just to pay bills as the prices for everything increases.
Just one example: we use A LOT of electricity. Louie requires 24-hour care that includes an electrical feeding pump, CPAP machine, suction machine, a specialist reclining chair and bed. He likes to use his iPad and watch television too.
Then I also use my washing machine around four times a day. Louie’s clothes and bedding need stripping regularly. If the weather is bad, then I use the tumble dryer too. Louie can’t regulate his own body temperature, so we use an oil heater in his room, sometimes on days we find warm.
We’re behind with electricity bills right now due to the excessive costs. The so-called government help won’t make a difference either. We use oil for central heating, and we struggled to afford this as the cost has tripled in comparison to what it was 10 months ago.
The World Socialist Web Site has initiated a Global Workers’ Inquest into the COVID-19 Pandemic to expose the political and economic interests behind herd immunity that have killed millions worldwide and continue to do so. We stand for an eradication policy as the only way forward.
This pandemic isn’t going away without an eradication policy. There is not, and will not be, “herd immunity,” because this is endemic.
We need everything throwing at this. We should have aimed for Zero COVID worldwide from the start—no question. As it stands, governments are deliberately prolonging it. We won’t change anything with regards to COVID unless it’s a universal approach. Everyone needs to do the same.
COVID doesn’t only affect those with underlying problems. I have seen many people telling how they were fit and healthy but now have Long COVID and basically function as I do with my fibromyalgia; their health flares so bad that they’re basically rendered physically disabled by fatigue, brain fog, breathing problems and other things they didn’t have before. Some were perfectly healthy children. People have lost their livelihoods because of it.
Masks should be mandated in public indoor spaces unless you’re unable. Testing and mandated isolating needs to be brought back. They abandoned it because they would need to fund sick leave. We should have a “SARSCov2 Payment” department that could plan long-term and should incorporate benefits for Long COVID.
We need all indoor communal spaces to be fitted with HEPA/Ventilation systems that will reduce build up if anyone is positive and can’t wear a mask. They should also still be cleaning. Masks need to be worn.
The reality is that no one is immune to COVID. Sooner or later, it will catch them when their immune system is low, and they won’t be able to fight it. We need a “no ifs, no buts” approach.