Family raising £100k for research into cure for son's rare genetic condition

A family hopes to raise £100,000 to help find a cure for their son, who has a rare genetic disorder and progressive lung damage.
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It took doctors six years to diagnose Keri and Ian Brooks’ son Owen, now nine, with primary ciliary dyskinesia (PCD) – a rare, inherited condition that affects several organs and gets worse over time.

Children with PCD have mucus build-up, which leads to inflammation in the airways and infections in the lungs, nose, sinuses and ears.

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Owen has had many hospital stays with chest infections and he has two hours of chest physio per day to keep his sinuses clear.

Keri and Ian Brooks with children Sophie and OwenKeri and Ian Brooks with children Sophie and Owen
Keri and Ian Brooks with children Sophie and Owen
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Keri, who works at HW Moon Toyota in Wigan as a sales administrator, said: "We always knew something was wrong. We hadn’t heard of this condition before he was diagnosed.

"Consultants at Manchester Children’s Hospital had mentioned it as a possibility, but to be honest we didn’t take much notice it as it was so rare.

"At six weeks old we took Owen to an emergency doctor in the middle of the night, as his breathing was really loud and sounded like he couldn’t clear his chest.

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"We were told that he probably had a cold as he was a winter baby. We went back to the GP when he hadn’t improved a couple of weeks later, who said it would probably disappear when he started sitting up but referred us to Preston Hospital.

"We were told that he had postnasal drip and that it would probably improve when the weather became warmer or he started running around more."

Doctors tried different things, such as inhalers, reflux medication and asthma medication, but to no avail.

Keri, who lives in Eccleston, said: "We were eventually referred to Manchester where they did an X-ray and compared it to the previous ones, noticing that the patch of damage (called bronchiectasis) on Owen’s middle right lung was present on all of them.”

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A test for cystic fibrosis came back negative, but doctors then arranged a test for PCD, with the positive result coming just two weeks before Keri was due to give birth to daughter Sophie.

Keri said: "When Sophie was six weeks old, Owen went into Manchester for a bronchoscopy procedure, intensive chest physio and to start two weeks of IV antibiotics.

"It was an incredibly difficult time. We were trying to get our heads around the diagnosis, learning all the treatments and medication he now needed, juggle who was staying at hospital with Owen, whilst looking after a newborn and all the while realising that our son's life was now going to take a different path to the one we had hoped for him."

The family set a target of raising £100,000 towards research and already have £35,000.

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Keri said: “We want to raise some money to go to research so Owen and others like him have, at the very minimum, specific treatments for their condition and, at best, ultimately a cure.

“We will be organising and taking part in events throughout the year in the hope to raise as much as we can.”

Money will be donated to charities PCD Support UK and PCD Research, both of which have supported the family.

Find out more on the social media pages for @100gforpcd or donate at www.justgiving.com/team/teamowenb

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