NARA The Breathing Charity

Whilst PulseGuard was originally developed as a seizure monitor, we work with other special organisations like NARA The Breating Charity, that help fund PulseGuard monitors for other complex medical conditions that cause changes to the heart rate and can be potentially life threatening.

NARA is a very special charity that was set up by Ann Jiggle and her family in 1984 to intitally help raise vital funds for monitors that could detect and alert to Apnoeic episodes in babies, particularly premature babies that had been discharged from hospital ready for home life, but who were particulary vulnerable from SIDS.

Over the past 35 years, the charity has been soley reliant on public donations and fundraising, but have managed to grow and provide Medical equipment, advice, information and a 24 hour helpline supporting all ages from tiny babies through to the elderly.

They offer help through their Community Care Programme, Local Community Scheme, Palliative Care scheme and through their ‘Breathing Monitor Appeal’ and ‘Breathing New Life Campaign’, they provide medical equipment into the home that helps relieve symptoms and improve safeguarding for the patient and their families, alleviating the daily pressures and enabling them all to live a ‘more normal’ lifestyle.

One of the many babies the charity have helped over the years, includes little Aryana. Her mother explains below the difference that NARA and their kind donation of PulseGuard has made to their life

“Aryana was born in August 2014 at 33 weeks gestation. At birth she needed help breathing and feeding and was in the Neonatal Intensive Care then the Special Care Baby Unit. Since then she has been in and out of hospital multiple times and is in pain daily.

Aryana struggled with ongoing feeding issues for the 1st year of her life which made home life incredibly hard for her family, watching her struggle in pain with meals and vomitting frequently which caused her to aspirate liquid and food into her lungs causing ongoing chest infections.

In 2015 she was taken into hospital for tests and found that she didnt have a properly functioning gag reflex which meant she was unable to take on oral food and fluids and was fitted with an Naso Gastric tube. This was meant to be a short term measure but for the past 2 years has been a permenant fixture, allowing Aryana to feed safely.

In October 2016 Aryana attended Portland street hospital in London to see one of the UK’s top gastrointestinal doctors.

Unfortunately in Belfast there isnt the same medical support or specialists that are available on the mainland.

He confirmed the diagnosis of FPIES – food protein induced enterocolitis. Protein which is found in all foods can send Aryana into life threatening shock.

He recommended that we Liase with a specialist dietitian who is also based in London, and She has been a great help to us, and Aryana is tentatively eating a little bit more. Unfortunately with her unsafe swallow we have had episodes were she has choked and needed blue lighted to the local hospital for treatment.

Due to severe reflux, metabolic issues and low muscle tone, Aryana has suffered from frequent apnea / bradycardia episodes.

At night time her heart rate drops too low and she stops breathing. We have graciously been given a PulseGuard monitor from NARA- the breathing charity, which alerts us when her heart rate drops. Prior to this we had to take it in turns to stay awake and watch her. This was exhausting and not practical to maintain.

The pulseguard also gives us peace of mind as she was NG fed overnight to get extra calories, and a concern is that the feeding tube could wrap around her neck. Aryana recently had a gastrostomy to change the feeding tube to a more permanent device that feeds her directly into her tummy.

More recently, Aryana was diagnosed with hyperinsulinism by the endocrine team at Gosh which explains her severe and dangerous hypoglycaemia, she is also being seen by Gosh for her gastro issues, and is undergoing more genetic testing but has recently started primary school and with the help of a 1:1 she is doing incredibly well.

Ann and the team at Nara have literally been life savers. We are eternally grateful to the love and peace of mind we have been given.

Ann is always a message or phone call away should we need any help or advice. She has been an advocate and an angel”

If you would like to support NARA and their continued work to help more families like little Aryana, please click on the link below

https://www.paypal.com/donate/?token=KQnQMirMld0kA6JhcgZMMsjeBrAVcyZOjd68UtWLF-DEodpFmFwmbVz7Dq5T4-2R0TmOa0&country.x=GB&locale.x=GB

or head over to their webpage http://naratbc.org.uk/



 

Author Info

Kate Farmer

Senior Clinical Advisor for PulseGuard International Ltd. I have 15 years experience working frontline A&E in the UK NHS Ambulance Service. I have gone on to train and research extensively around epilepsy, to provide the most up to date information, clinical advice and support to PulseGuard customers and followers as well as living first hand with the personal effects of Dravet Syndrome within my family

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