Unless you're a family member or a close friend, you may not know that my wife, Julia, has lived with a very rare and life-threatening blood disorder called aplastic anaemia since the age of 12.

In people with aplastic anaemia, the bone marrow fails to produce enough of all three types of blood cell - red, white and platelets.

Around 2 people per every 1,000,000 are diagnosed every year (I’ve always said she was special). It’s so rare that it even took a full episode of House for Hugh Laurie to diagnose it in a patient.

23 years later and 6 months before our wedding day in 2014, Julia was then diagnosed with PNH (paroxysmal nocturnal haemoglobinuria) which is another extremely rare blood disease associated with aplastic anaemia where blood cells are vulnerable to being attacked by a particular part of the body’s immune system.

Only 5 people in 1,000,000 are affected by PNH (see, I told you she was special).

Now under the supervision of Leeds Teaching Hospital and Professor Peter Hillman, Julia started a treatment which is administered by way of intravenous infusion. This meant that once every two weeks our conservatory would transform into the ‘Julia Wing’ and a nurse would visit our home and administer the drug.

Even during Covid, when we both had to shield away from the world for nearly 2 years, the nurses would visit and administer the drug to Julia. I think she actually looked forward to the visits as it was somebody else to talk to instead of just me.

It was during this period that we both found The Aplastic Anaemia Trust a great source of information regarding research they were undertaking into the effectiveness of the Covid vaccine in immunosuppressed people. The results of this research gave Julia the confidence to re-enter the world and slowly return to ‘normal’ life and her job as a high school teacher.

Then, in 2022, Julia was told that there was a new improved version of the drug which only needed to be administered every 2 months! This was life changing, but it gets better.

Last month Julia was given the unbelievable news that she doesn’t require the infusion anymore.

“Why not?” we asked. Well, to put it simply…

When Julia was first diagnosed with PNH only 5% of her blood cells were healthy (they didn’t tell us this at the time, thank God!) Today, 10 years later, Julia’s healthy blood cell percentage is around 95%...basically normal and nothing short of a miracle.

The reason I am putting myself through 12 weeks of training for the Great North Run is because I want to give something back. If it wasn’t for charities like The Aplastic Anaemia Trust and the PNH team at Leeds Teaching Hospital, there wouldn’t be sufficient funding for research or patient support and if the money raised can help just a handful of patients, then it will be worth it.

Thank you for taking the time to read a very personal part of my life and please donate if you can.

✅ £5 Puts expert information about aplastic anaemia in the hands of those who matter
✅ £15 Pays for 1 hour of timely emotional support on their helpline
✅ £25 Connects people in support groups who understand what they’re going through
✅ £50 Helps fund research that will improve treatment options Daniel Seddon