Local couple Arlene and Wullie Patterson are appealing to people in Dumfries and Galloway to help them raise funds to allow their daughter Nyia to access specialist medical care not available on the NHS.
The couple, from Lochmaben, are desperate to help their two-year-old, who has been diagnosed with a Glioma tumour on her brainstem.
At 35 weeks pregnant Arlene and Wullie were told Nyia had enlarged ventricles in her brain, caused by having a stroke whilst in utero between scans. Arlene was admitted to hospital at 36 weeks gestation and induced at 37 weeks welcoming Nyia into the world slightly prematurely.
The family then faced many admissions and medical tests to find out why little Nyia was so poorly and not developing normally. Brain scans revealed Holoprosencephaly (the brain has not divided into two correctly) Then on 1st Dec 2020 Nyia was diagnosed with the glioma tumour. In January 2021 the family were advised no treatment was available on the NHS for Nyia’s tumour and that they should go home and make memories with their family: words that no family ever want to hear.
Nyia is a charismatic little lady, with a strong determination and huge love of horses. She has faced more difficulties in her two years than most face in a lifetime. Nyia is developmentally delayed compared to other toddlers. She has very limited speech and poor motor skills, so is wobbly on her feet. She also has difficulties with her vision and hearing.
Nyia also has a lot of medical issues and spends much time in hospital away from her much loved siblings, Ceyrian, Rhys and Eden. She has seizures and suffers with sleep apnoea, which causes her to stop breathing during the night. Someone must always be on hand to make sure she is breathing. She also struggles to maintain her body temperature and a small illness can be a big deal for Nyia.
As Nyia’s tumour grows it will put pressure on other areas of her brain and her difficulties will increase. It is not possible for doctors to tell the family how long Nyia may live with this condition. Arlene and Wullie are determined to do everything they can to access treatment and support for Nyia, however having exhausted what it available on the NHS they are now faced with having to raise huge amounts of money themselves to help her.
Specialists at the Walton Centre in Liverpool, world renowed experts in children’s neurology, have indicated they may be able to help Nyia on a private patient basis; the family could be looking at a bill of £100,000 if appropriate treatment can be identified. The family have already raised £10,000 to enable them to have an initial appointment at the centre and are now desperately seeking to ensure they can pay for any assessments, tests or treatments identified.
Family friend, Donna Gordon, has set up a crowdfunder to allow people to donate towards Nyia’s fund and the family are now hoping that kind locals will help contribute towards it.
Donna said “ This money will aid with the exploration of further treatment options that may prolong and improve Nyia’s life. Any contribution is appreciated!”
If you would like to donate, please follow this link: Crowdfunding to help fund treatment for Nyia Patterson on JustGiving
If you would like to keep up to date with Nyia’s story you can follow the family on Tik Tok: NyiasJourney (@nyiasjourney) TikTok | Watch NyiasJourney’s Newest TikTok Videos