MOTHERWELL youngster Finn Ross looks like a typical excited eight-year-old boy getting ready for his first ever Cub Scouts camp, an occasion his family were worried he may never enjoy.
Finn has the genetic condition Primary Ciliary Dyskinesia (PCD) which affects the microscopic hairs in the lungs, causing mucus to build up.
One in 15,000 people in the UK are affected by PCD and it causes recurrent chest infections, breathing difficulties and lung damage.
When Finn was born four weeks early he was a good size at 8lb, but he was blue.
He needed resuscitating and was admitted to intensive care.
His mum Angela, who has four other children unaffected by PCD, said: “It was totally unexpected as I’d had an easy pregnancy.
“Finn was born with pneumonia and the doctors kept having to resuscitate him and it was pretty bad in those early days.
“He had a blood transfusion plus lots of antibiotics and when he was three days old his health worsened and we were told he had little chance of surviving.
“His lungs weren’t working, but the doctors didn’t know why and decided to try one more type of antibiotic on him and thankfully this one worked in a week.”
Finn was well enough to go home after 12 days, but a week later he was re-admitted again with pneumonia.
By the time he was 18 months old he’d had pneumonia seven times as doctors diagnosed severe asthma which was causing breathing problems.
Angela said: “It was hard going, we had a one year old child too and Finn was in and out of hospital.
“Over the years he’s been in hospitals wherever we’ve been on holiday – Spain, Portugal and Canada.”
When Finn was two years old he was referred to the Royal Hospital for Sick Children in Glasgow for further tests.
He had a nasal biopsy, where cilia (microscopic hairs) are plucked from the nasal passages and re-grown in a lab.
For the first time the doctor mentioned PCD, a condition Angela had never heard of the before.
She said: “He told me the worst case scenario.
“He said if he had PCD he wouldn’t be able to run about, he’d never do sport, would always be ill.
But he said that he was pretty sure Finn didn’t have it because he wouldn’t look as well as he did, then they went to look at the sample under the microscope and he came back and was very apologetic.
“He said he could see from the structure of the cilia that Finn definitely had PCD, he couldn’t believe it as Finn looked well and he has always had a lot of energy.
“In a way it was a relief as at least we knew what the cause was and what we were dealing with.
“We went home and I looked on the internet for PCD and the first thing I found was an article about a man with PCD who had run the marathon.
“I read that the more active you are the more you are able to cope with the condition.”
PCD is an autosomal recessive inherited syndrome, meaning it can only be inherited if both parents are carriers.
The chance of having a child with PCD is one in four if both parents are carriers.
In PCD the Cilia or microscopic hairs lining the lungs and trachea don’t move properly, so mucus builds up in the lungs.
Medication and daily chest physiotherapy help to keep the lungs clear.
As Finn was so young he used specially designed blowing pipes, one in the shape of a crocodile, to make exercising his lungs fun.
He also has severe asthma, which was worse until the age of four, and meant he frequently woke up in the night coughing, unable to breathe and would turn blue.
The slightest cold could put him in hospital with a chest infection, which made Angela very wary of exposing him to germs.
In the last few years Finn has been well and has suffered fewer infections and enjoys exercising especially swimming and trampolining, great for loosing mucus.
Angela said: “Finn’s health is now more stable than it has been.
“If he coughs up any mucus we have to go to hospital to be checked out as he is more prone to infections, which can cause lung damage.
“He’ll always be more vulnerable to infection and I do get nervous when people around me start coughing, but we try our best to keep him as fit and well as we can.
“Some parents keep their children off school regularly to avoid infection, but we don’t want to wrap him up in cotton wool.”
Finn is doing well at school and he has a 90 per cent attendance record.
He loves tennis and swimming and playing with Dr Who figures and the family keep life as normal as possible.
In the summer of 2010 he was in hospital for 14 days with a chest infection when they were due to go on holiday to Spain.
Doctors agreed to discharge him if he didn’t fly, so his Dad Peter took him on the ferry.
Angela said: “We don’t want Finn to miss out on things in life.
“He knows there are things he can’t do, but he is so optimistic and I’ve never once heard him complain and he is really upbeat about everything.”
Finn is helping to promote the 17th annual Jeans for Genes Day on Friday (October 5) in aid of Genetic Disorders UK, the country’s only children’s charity that aims to change the world for youngsters with genetic disorders.
A grant from Jeans for Genes Day will fund the first family conference for those affected by ciliopathy related conditions enabling families to be brought together and updated on the latest research and clinical practices as well as sharing experiences with other affected families.
Angela said: “Receiving this grant is brilliant and the support the charity gives you as a parent is very much needed.
“When Finn was first diagnosed I felt very nervous as I didn’t know what to expect and it seemed so unpredictable.
“It helped to talk to people who really know what you’re going through.”
For more information on Jeans for Genes day visit the website