It is two years now since I lost my wonderful husband Craig Longley at the age of 36 to Meningitis.

He had a rare blood condition called Paroxysmal Nocturnal Haemoglobinuria

PNH is a rare blood condition where blood cells are prone to be attacked by part of the body’s immune system. The process where the red blood cells are destroyed is called “haemolysis” and it is responsible for many of the symptoms of the disease. “Haemolytic PNH” affects about 5 people in a million of the general population.
https://www.pnhleeds.co.uk/patients/

Craig was affected by this and after being diagnosed in 2005 it wasn't until 2013 when he became very ill that we found out there was a treatment. He was then given the treatment. The treatment was every two weeks via an intravenous drip. The treatment made him more susceptible to meningitis. He contracted this and unfortunately died in September 2019.

It's now time to raise awareness of this disease and to tell Craig's story.
The NHS is a fantastic system we have in the UK however, there are faults within the system. I took Craig to A&E on the Sunday, we were not asked if he had any medical conditions and the backache he was suffering was treated with codeine and said to be muscular. I thought that patient notes were accessible when you went to A&E but this is NOT the case.

Little did I know that my husbands body already had the meningitis infection raging through it. He became progressively worse and after ringing 111 I was told to get him back to A&E as soon as possible. When I got him there my super fit husband was struggling to walk and I could see the infection through his skin which was yellow. I then knew this was really bad. I was later told he would be put to sleep and he would never wake.
My world was shattered, and I had to watch my Craig die.
I would no longer have my husband, my friend, my soul mate. My children would no longer have a daddy here walking the earth with them, sharing in the enjoyment of them growing up.

Myself and my friends and family want to walk the Yorkshire Three Peaks in memory of Craig to honour him. We are doing this on what would be his 39th birthday weekend. I will be forever grateful for all I shared with Craig and for the magnificent legacy he has left behind in our children.

Craig was the first person in the UK to die from meningitis with the PNH condition.

If you could donate any amount would be greatly appreciated, and will support PNH Leeds to continue vital research and treatments for those who suffer with this disease.
Thank you so much for your support.