THE parents of a north-east baby with a rare lung condition have launched a campaign to raise awareness – after discovering she is one of just two people in Scotland fighting it.
Little Alannah Sangster needs round-the-clock oxygen to battle the condition, which makes it difficult for oxygen to cross over into her bloodstream.
The eight-month-old was diagnosed with a form of children’s interstitial and diffuse lung disease last month, after she stopped breathing and was rushed to hospital.
Now her parents, Lauren Norris and Bryan Sangster, have launched a campaign to highlight the condition, while also raising funds for the Child Lung Foundation.
In December, Alannah stopped breathing and – fearing that she might lose her baby – her mother called for an ambulance.
“Alannah’s cough wasn’t like any other cough,” Miss Norris, 21, said. “She would get to the point she was going bright red and struggling to get anything up.
“It then got worse and on December 30 we had to call an ambulance because she stopped breathing and turned blue.”
The cough began when Alannah was only four weeks old, but doctors initially thought it was a chest infection or virus.
The symptoms persisted and despite being born a “healthy” 7lb 11oz, seven months later she had only gained another 5lb in weight.
“We knew something wasn’t right,” Miss Norris, of Boddam, said. “You could feel every bone in her body, she was that little. She is not gaining weight at all.”
Last month, the tot was admitted to the Royal Aberdeen Children’s Hospital for three days for extensive tests.
Although the inherited lung condition cystic fibrosis was ruled out, Miss Norris and Mr Sangster, 23, were both genetically tested to establish the cause of Alannah’s potentially life-threatening disease.
The young family, which also includes Alannah’s three-year-old brother Kieran, are now awaiting the final results of the tests.
In the meantime, the tot has been put on 24-hour oxygen to help her breathing. She will need to use the tank for at least a year to help her get back on track and may need to use it throughout her childhood.
It will affect her ability to do physical activities such as sport and dancing, and the tank cannot be near an open flame – meaning she will miss out on having a candle on her first birthday cake.
Now Miss Norris is hoping to boost funds for the Child Lung Foundation, and already has the backing of shops in Boddam.
She has also set up a blog on social media called Alannah’s Diary to raise awareness of the condition – which experts say can be hugely isolating for families.
The mum added: “We’re only aware of one other child in Scotland with the same condition – Harper Hyslop. Her family are also doing a lot of campaigning.”
Five-year-old Harper lives in Alexandria in West Dunbartonshire and was diagnosed with interstitial lung disease last year.
Her family launched a group called Harper’s Helpers to campaign for research funding, and have so far raised more than £4,000 for lung disease charity Child UK.
Last night Carlee Gilbert, the director of Child Lung Foundation, said more must be done to support families facing diagnosis.
“Due to its rarity, it can be incredibly isolating for a newly diagnosed family so we do try and keep families as supported as possible in the beginning, especially since the diagnosis phase can be long and daunting.”
She said children need intensive medication as well as supplemental oxygen and even feeding tubes because the condition makes a child’s body “work much harder than normal” to do even the simplest tasks.
Mrs Gilbert added: “As you can imagine, this is not only difficult for the child affected, but it has a massive impact on the rest of the family too.”
The charity was set up by affected families and seeks to offer emotional and practical support as well as small financial grants.
To support the family’s fundraising efforts, visit www.justgiving.com/fundraising/alannahs-diary-child
