Josie was the happiest and chirpiest of all of us

David’s niece, Josie, really was 1 in a million - she had a rare children’s lung disease.

Josie

Before she was even 1 year old, Josie was diagnosed with childhood interstitial lung disease. Our whole family bore the emotional burden of diagnosis and the stress that unfolded.

She turns 4 this November - and is now the most charming little lady you have ever met - but our desire to help others through tough times like these is as strong as ever.

In the months following her birth Josie failed to gain weight at a quick enough rate. In March 2013, at just three and a half months old, she was admitted to hospital with bronchiolitis.

The doctors listened to her lungs - they heard crackles - she was referred to a paediatrician who X-rayed her lungs. There then followed numerous stages of diagnosis and treatment: CAT scans, bronchoscopies, and ultimately the terror of a biopsy... Josie would spend the majority of her early years attached to a constant oxygen supply. She’d be taken back and forth to the hospital to check blood oxygen levels or to check whether a runny nose was a toddler’s sniffle or something more sinister.

It lasted years.

Josie was brilliant

Seeing a child in surgery is not a sight I would wish upon anyone.

The stress placed upon Josie's little body was simply unfair – and yet she was the happiest and chirpiest of all of us! The trauma of having an ill child places pressure upon the whole family.

My sister, out of a sense of catharsis as well as a desire to keep everyone informed, kept a blog through Josie's worst stages. You can read her words - it's far better than my paraphrasing. (You also get to witness my nephew Oliver be the most doting older brother ever!)

Our family were supported by the wonderful medical staff who oversaw Josie's diagnosis, biopsy and treatment. The staff of our National Health Service, in particular those at Salisbury and Southampton Hospitals, deserve our endless thanks, support and solidarity (and if I had my way a great deal more Government subsidy).

A small, focused charity, ChiLD, gave us a great deal of information and emotional support too. They provided my sister and brother-in-law with a network of children and families who had lived, or were living, through a similar turmoil.

Isolation in the face of an unexpected health concern to your child is terrifying. Simply having someone to talk to who understands means a great, great deal.

We still know so little

I’m scared that we still know so little about children’s interstitial lung diseases.

There are a vast variety of lung conditions that a child is susceptible to, and we currently have limited information on these diseases.

We cannot run tests on children - they are our most valuable possessions - so our awareness of what brings these conditions about grows slowly, case by case, and at the discretion of those parents who may be willing to try more experimental procedures.

Do you put a toddler on steroids with all the side effects that that may entail? Do you simply keep them on a higher percentage of oxygen to compensate for their damaged alveoli? Do you attempt something more radical? Either or neither may be effective.

It's a choice I hope never to have to make for my children. Any effort we can make pre-emptively to alleviate concerns, to inform those living through it, can surely only be in the best interests of everyone. The British Lung Foundation’s children’s hub of information can only be a great idea.

Most people, and I too was guilty of this, believe that lung disease primarily affects old people or smokers.

Our children are so vulnerable - a lung disease at a young age can limit the amount of oxygen they get and stunt their physical and mental development at the most important stage of their lives. It's a crime to restrict someone's possibilities before their life has yet begun.

We presume that if a child has a lung disease, it probably means they were born genetically weak, that there was nothing we could do about it or that they just suffer from asthma which people wrongly believe to be a slight concern.

We live in a world with increasingly poor air quality. The recent Paris accord hopes to affect some change to carbon emissions and toxic nitrogen dioxide, but levels in big cities like London are already far above those new voluntary limits agreed upon in France. New governments seem focused on commerce and industry; new rail-links and runways. And yet we’re simultaneously devaluing healthcare and the environment. What problems we have now are likely to worsen, unless we dig in.

I’m here now trying to raise awareness

I had not heard of ILDs before Josie was diagnosed – why should I? I'm simply here now, trying to raise awareness, because I’ve had the misfortune to have lived in proximity to a child with interstitial lung disease. I know what it’s like. We who have lived already owe those that have yet to live the opportunity to live well.

Josie is now 4 and is living a normal life – she has no symptoms at the moment. Our experience was by no means the worst case scenario. We all realise how lucky we are.

Read all our information and advice about children's lungs.

David has designed a Christmas card for us this year - there's still time to get yours.


David Oakes

David Oakes

David Oakes is a film, television and theatre actor. You may have seen him most recently in Victoria. He’s also an artist and has designed a Christmas card for us.

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8 December 2016