How living with a rare condition has been affected by the pandemic
Hi, let’s start with a bit about my family. There are four of us: myself, hubby and two grown up boys. Lewis is 29 and has ADHD and mild Asperger’s and Ashley is 25 and has just had a diagnosis in February this year of 4q21.22 microdeletion syndrome. We have spent the last 24 years looking for answers and he is the reason we joined SWAN UK.
Ashley’s syndrome is extremely rare, and he is the oldest known case in the world as far as we know. He is an extremely happy lovable chap, he has SLD and the mental age of six to seven with the speech age of two to three. He also has epilepsy, brachiectasis, chronic asthma, gastric reflux and mobility issues to name a few.
Due to the current Covid-19 pandemic, we have been shielding since 16 March, as there is so little known about his condition and with his current health problems it has been regarded as too dangerous for him, even after the shielding pauses in August (hopefully).
The whole family have had to isolate with him, as, due to his care needs, we weren’t able to isolate from him. We have been told to carry on as much as we can going forward, and if we go out we must keep a 2 metre distance and have as little contact as possible with other people. This is proving to be difficult.
We thought that, as we live in a village, we would be able to take our first tentative steps back into the world, especially as they had implemented a barrier system to enable distancing on the narrow pathways, and a one-way system for the traffic to help ease the flow through the hight street. But unfortunately, most other residents have taken offence to this and started a petition to remove the measures.
I have posted the reasons and other perspectives about this on social media. When I commented that although distancing and lockdown was easing for the majority of them, there are still residents that were shielding and had not made the step out yet, this was met with ridicule and a tirade bordering on abuse. We were laughed at and told to not be stupid as no one here has it, we live in a nice place you can’t catch it, and lots of similar comments. I have pointed out that everyone is doing this at different rates and for different reasons, and again it was met with the same. Even our MP seems reluctant to help.
There have been a few residents that have offered to take us down to the high street for our first steps, but however well intentioned this is, it is not really in the lines of social distancing and limiting contact. The protests about the barriers have escalated so badly that the residents have taken to posting pictures on Facebook of the barriers being knocked down and left in the path.
This is not only vandalism but dangerous for disabled, elderly and vulnerable people, and the local residents seem to think this is all a big joke. I am still pressing for our MP to help. I have also contacted national newspapers, whom I’m waiting to hear from as I write this.
Accessing healthcare has been different. We did have to pay a visit to A&E at the start of lockdown to have Ashley’s bladder emptied, which is one of his problems that happens regularly. They were helpful and aware of his needs and saw us as quickly as they could, keeping our contact with people as little as they possibly could.
All other care since then has been over the phone, email, or for our GP the e-consult service has been brilliant as it means I don’t have to spend 10 minutes explaining things to a receptionist but get the help or request easier. This only works for non-urgent requests or ailments though, but we will keep this up.
Ashley has obviously left school and college as he is 24, but he did have a full weekly programme of activities with two different support networks. One is ‘We Do Care’ which was set up by a couple of mums with special needs kids a few years ago and they do various activities trips and events that we book him onto each month. These range from voluntary work, to trips to the seaside, regular discos, evening meals out and even holidays. They also do educational things like cooking, drama and driving lessons, obviously depending on ability. This is all with his peers and friends.
During this lockdown they switched it all to Zoom and he does things every day from arts and crafts (my dining room looks like a Hobbycraft store/naursery), to quizzes, bingo and talks from the local alpaca farm. They also do half an hour of exercise and dance each day to keep active. Now with lockdown easing they have created a bubble so Ashley can meet with the same group of friends each week and get back some normality, and I get a couple of hours peace. This is obviously following all social distancing rules.
The other support network was one to one support which took him out to the shops, on the bus, to the cinema and anywhere he wanted to go. This has unfortunately stopped, partly as no staff are in our area anymore, and also due to the distancing rules. Shop rules including no cash payments or touching things would be too difficult and upsetting for Ashley to cope with, but we have managed to get those hours transferred to ‘We Do Care’.
Our hopes for the future are simple. We would love everything to get back to normal with no danger and have a vaccine. But until such times we will keep going the best we can and will continue to fight to get his and other voices heard.
How has your family life been affected by Covid-19? If you would like to share your experiences please get in touch: email@example.com.
Related news and updates
Who should be prioritised for Covid-19 Vaccine?
Genetic Alliance UK recommends that people with genetic, rare and undiagnosed conditions be prioritised for Covid-19 vaccine.
Lockdown 2.0 - here we go again
Clare talks about the decisions her family has to make to keep their extremely clinically vulnerable son safe during the new lockdown.