Old Priory Presntation to Noa

Pictured with Noa and his mum and dad are W Bro Mark Phillips, WM and W Bro Alan Dennison. Not included in the picture is W Bro Peter Gregory, Charity Steward who was the official photographer on the night.

One day into the job and W Bro Mark Phillips,  the new WM of Old Priory Lodge has already been called upon to carry out a charitable donation to Noa, a 12 year old child in Milford Haven. Noa developed ROHHAD's disease at the age of 4 years old. 

 

ROHHAD is a Rapid-onset obesity with hypothalamic dysregulation hypoventilation and autonomic dysregulation. It is a rare, life-threatening syndrome that affects the autonomic nervous system which controls involuntary actions like breathing, heartbeat and the endocrine system.  It is so rare there are only 75 children in the world diagnosed with this type of disease and only 6 in the UK.

 

Due to his condition, Noa is under the care of the Paediatric Palliative Care Team and the family are in the process of having a magical wish granted through Make-A-Wish to go to Euro Disney. This trip was originally planned for April 2019, however due to ill health, they have expedited the trip and the family will now travel on November 26th 2018.

 

Noa's mum and dad were delighted to receive a sum of 525 Euros to help towards their spending costs and have promised some of the holiday snaps to the WM as a memento of the kind donation from the brethren of Old Priory Lodge.

Print Print | Sitemap
© Masonic Province of West Wales