Craig Longley had PNH a rare blood condition. It wasn't until after his death that I really understood this condition. Craig just got on with it. He didn't always talk about it and I just so wish that we had.

Our PNH story.

Craig was diagnosed at age 22 after a car accident and was handed a leaflet. At that time there was no treatment! I remember us sitting and crying at the thought of him having ten years to live!

A treatment was developed and started in 2008. However, it wasn't until 2013 after Elvy was born that Craig became ill. It was coming up to the ten years after diagnosis. Luckily the doctor at Pinderfields knew there was a treatment at St James Hospital and ensured that he got the treatment he needed. Unfortunately the medication increased the risk of contracting meningitis.

I can remember Craig saying he didn't want children when we were younger, but I think that was because he was scared he might not be here to see them grow. That became true in 2019 when he contracted meningitis. Something that I still can't quite believe. To be told by a doctor that your husband is one of the sickest people they have ever seen and he won't live, was absolutely devastating. To have to say bye before he was put to sleep knowing he would never wake, but saying see you soon, so he was unaware broke my heart.

Here we are now living with him in our memories and our hearts. I'm so glad we had two beautiful children, and they got to spend that short time with their daddy. He loved them so much and they adored him 🥰

On March 17th me and the kids will be walking around Derwent Valley and Resevoir (probably in the rain!), to remember their daddy who loved an adventure and always pushed himself to the limit. I want to help PNH make sure this doesn’t happen to another family. They have put lots in place for patients since his death, and this is what I want to continue to support in memory of Craig. Always in our hearts 💕

How PNH Support are planning to help people this year:

- Provide expert emotional well-being support, designed and delivered by qualified psychologists

- Help members of our community to access benefits and insurance

- Publish new up-to-date information resources to help people understand the condition, current research and treatment

- Facilitate improved opportunities for peer-to-peer support

- Raise awareness and help you to explain the condition to clinicians, teachers, employers, and the public.

Thanks for your support in our fundraising. Love Ali, Elvy and Benjamin