Angus Macleod, chair of the Western Isles Kidney Patients Association, pictured outside Ospadal nan Eilean in Stornoway, where the renal unit is located
The mum of one young kidney transplant patient in Lewis is organising a fun day so that children and families affected by renal problems can get together and give each other support.
The event, being planned for September in Stornoway, is being made possible by community wind farm charity Point and Sandwick Trust, who have donated £1,000 to the Western Isles Kidney Patients Association to help towards the costs.
It should be good fun for the young kidney patients, as well as an informal occasion for their families to get to know each other and share experiences.
Lorna Dodd, whose son Joel received a kidney from his father in April last year, has experienced the benefit of taking part in these days herself, during spells on the mainland for Joel’s treatment – and believes other island families would benefit from something similar.
She explained: “I’m hoping to organise a day where it’s mostly for the kids but also for the families because I’ve been to a few Kidney Kids days on the mainland.
“The kids get an awful lot out of it but so do the families.”
Her younger son, Joel, now 13, received the kidney from his father, Steve, following a diagnosis of cystinosis when he was 10 years old.
Cystinosis is a rare genetic disease that causes an amino acid to accumulate in the body and form crystals. Left untreated, it can lead to end stage kidney failure in children around the age of nine.
For Joel, his condition was spotted by a locum optician at an eye test after doctors had missed it.
“It was an optician that picked it up because he had crystals growing in his eyes,” said Lorna.
“He took one look at him on the Friday and we were in Yorkhill on the Monday.”
There are several forms of cystinosis, which affects various organs in the body and can include symptoms such as frequent urination and excessive thirst.
Before Joel was diagnosed, Lorna “knew something was wrong with him but we didn’t know what – I kept thinking it was diabetes and we kept taking him for blood tests”.
By the time he was diagnosed, Joel’s kidney function was down to 30 per cent.
“Everything was totally getting missed but then the locum came along and looked in his eyes.”
Cystonisis is rare, affecting only around 200 people in the UK and 2,000 worldwide. Although it affects the kidneys, it cannot be managed with dialysis as that makes the condition worse.
Since getting his transplant, Joel has to attend hospital in Glasgow every four weeks. The trips to Glasgow have meant they have got to know other young renal patients and families at the clinic, as well as meeting others at the Kidney Kids days.
Lorna said the main point for organising such an event in Lewis was “just to get people together”.
She said: “It is so that the parents can get together and so the kids can have some fun because it’s quite a lonely place as a parent when something like this happens. You don’t think there is anybody else out there who is like this or having to go through something similar.”
The plan is to have activities for the young people – the events on the mainland included watersports and a mini Highland games – while the adults gather for a cuppa and a chat. There will also hopefully be renal nurses or doctors on hand to give advice and answer questions.
Even among families who have gone through similar procedures, such as donating kidneys, individual experiences do differ “so things like this really help”, said Lorna.
“Living on an island and not knowing anyone else going through something very similar makes things quite lonely,” she added. “Whereas if you knew there were other people, you could phone up and ask, ‘I don’t know what’s going to happen next… do you have any idea?’
“You look at these kids who have been faced with so much at a young age and then you meet people who say, ‘I’m really struggling with the cold today’.”
Lorna said the Western Isles Kidney Patients Association had been “amazing”. Some of the help they give is financial – “we were away for four months and two days so it was like trying to keep two houses” – while other help comes in the form of emotional support.
“It’s not easy. When you are staying down there it is extremely expensive. The Kidney Patients Association have been fantastic. They’ve been really, really good.”
Angus ‘Texie’ Macleod, chair of the Western Isles Kidney Patients Association, said they were extremely grateful to Point and Sandwick Trust for the donation towards the Kidney Kids day.
“Lorna was very enthusiastic about the Kidney Kids day,” he said.
“She thought that it would be great because there is nothing like it up here.”
Point and Sandwick Trust general manager Donald John MacSween said they were delighted to be able to help, adding: “PST recognise the contribution made by the volunteers at the Western Isles Kidney Patients Association to provide additional support to their clients to make difficult circumstances a little bit more bearable.”
The Kidney Patients Association was set up in 2001 by Martin Macleod and Peter Macdonald, who fought until 2007 to get a renal unit established in the Western Isles Hospital in Stornoway.
Now, there are 11 patients attending the unit for dialysis three days a week – Monday, Wednesday and Friday – but previously the dialysis patients had to travel to Inverness for the whole week.
Angus recalled: “There were four of them, travelling to Inverness, out on a Monday morning back on a Friday night, weather permitting.
“I asked one of them what difference that made to her life, just going to the (local) hospital for dialysis. She said, ‘Angus, I can cut my grass on a Saturday because I’m not as tired. And on a Monday morning, I look at that plane going away to Inverness and I thank God I’m not on it.’”
The Kidney Patients Association is constantly fundraising to have the resources to be able to support and assist kidney patients and their families throughout the Western Isles.
Anyone who wants to donate can do so via the charity’s JustGiving page, https://www.justgiving.com/wikpa.