Imogen’s BO diagnosis

Hi, my name is Kacey and I am mum to Imogen.

Imogen is a sweet, intelligent and polite little girl with a sassy streak. Just two weeks before her 1st birthday, Imogen contracted Covid-19 and adenovirus. Unlike most children, she became seriously ill and required hospitalisation for two weeks. At 8pm on her 1st birthday, she was finally discharged. But she never really recovered.

As her mother, I’ve always been her advocate. But for three long years, my voice wasn’t enough. We faced countless GP appointments, A&E visits, consultations, and referrals – many of which were rejected or dismissed. Time after time, Imogen was sent home, despite my deep concern and clinical evidence that this was more than a simple ‘chest infection’. We were repeatedly ignored, even as evidence continued to mount that something more serious was wrong.

Imogen’s symptoms never really resolved. She often sounds like Darth Vader, or a purring cat, due to wheezing, crackling and squeaking in her chest. She can be breathless, pale and tired. She’s struggled with her overall growth and appetite. She has terrible wet coughs, sticky green phlegm, gastric reflux and body aches. As her mother, I always knew something was wrong. The phrase; ‘But she looks ok to me’ brought no comfort and repeatedly dismissed my concerns, regardless of how well-intended the comment was.

After two years of going in circles with no answers, I took matters into my own hands. I booked a private consult with a highly recommended ENT specialist (£500 for a 20 minute consult), thinking that Imogen perhaps had subglottic stenosis (narrowed airway). That short meeting changed everything.

He immediately recognised the urgency of Imogen’s condition and referred her for a bronchoscopy. The results confirmed our fears, with a narrowed airway being diagnosed in addition to her lungs being full of abnormal sticky mucus. These results triggered an urgent referral to respiratory at the Bristol Children’s Hospital, however this process still took another 8 months.

This leads us to now. On 20th May, three years and one month post Covid. Imogen finally had a CT scan last week. The results are devastating. She has been diagnosed with bronchiolitis obliterans – also known as popcorn lung. This is in addition to mild bronchiectasis and some collapsed lung.

Shockingly, Imogen’s x-rays showed evidence of progressive lung disease as early as April 2022.

She has had eight x-rays since 2022, all indicating progressive lung disease, with terms used such as ‘opacification’ and ‘reduced air entry’. Despite this, she received no diagnosis, no coordinated care and no intervention.

Popcorn lung requires prompt attention and even worse, is a known complication of adenovirus, and additionally severe Covid in children. Appropriate follow up care was not provided for Imogen and she fell off the radar post-Covid.

We are unsure yet on severity, prognosis or ongoing needs, especially that it’s such a rare disease.

This outcome is the result of systemic failure. NHS staff missed repeated warning signs due to poor communication, fragmented records, and a lack of coordination between Gloucestershire, Bristol and Aneurin Bevan health boards. For three years, Imogen has been let down. Now, we are forced to pay the price.

I will now start the ball rolling for all NHS boards to communicate transparently and consistently so that no other adult or child suffers the same negligent care as Imogen. There must be no gaps in care, no delays in diagnosis, and no missed opportunities to intervene.

The reason for this fundraiser is to help us with some of our new costs. It is an incredibly hard thing to be putting out there and one I’ve deeply considered and debated for the last week. I’m hoping to team up with some amazing business owners in order to also support their enterprises too.

Here is a non-exhaustive list of the kit we are looking to purchase.

HEPA air purifier x 2 (now ordered)

Dehumidifier x 2 (now ordered)

Improved nebuliser machine

Portable nebuliser machine (now ordered)

Peak flow and asthma machines (now ordered)

Medical storage bag (now ordered)

Steriliser and tabs (now ordered)

Pari mucus clearance device (now ordered)

Aerobika (gifted)

Hydro bubble bubble PEP kit (now ordered)

Sturdy buggy system (now ordered)

Incentive spirometer (now ordered)

Therapy sessions

We would also like to split 10% of donations between the Ronald McDonald’s Hospital House charity and also the Asthma and Lung charity.

A HUGE thank you and shout out to the following businesses for their support.

Yugen Works

Craptical Classics

Blessed Be Alternative Emporium

UPDATE - 11/6/25

Thank you everyone so much for the support. Having this burden off our shoulders whilst navigating Imogen’s diagnoses has really made a difference. We have gone over our target - therefore we also purchased a gift for the Ronald McDonald House Bristol via their Amazon Wishlist.

Any future funds will go towards the more chronic costs. These include therapies such as play therapy, hydrotherapy/1:1 swimming, private physio appointments etc. It will also assist with costs in relation to her health - time off work, fuel to drive to specialists and appointments, parking charges, ULEZ fees, ongoing equipment replacement and maintenance, carer support, improvements to the home (damp proofing, mould repair etc).