My Story

Our 14 year old son Lucas has been living with the rare kidney condition Nephrotic Syndrome since the age of 4. Nephrotic Syndrome affects how the kidneys function, resulting in high levels protein being lost from the blood into the urine.  It is a relapsing and remitting presentation and during relapse Lucas can be very unwell, requiring hospital admission for treatment to help get him back into remission.

Lucas has “frequently relapsing” Nephrotic Syndrome so over the years has endured countless hospital admissions. He takes multiple medications every day, many of which have horrendous side effects. He is on constant immunosuppressant treatment so even a cough or cold can make him seriously ill. He has suffered awful secondary complications due to prolonged and high dose steroid treatment, the most serious being adrenal insufficiency.  This means that he is at risk of a potentially fatal adrenal crisis if he is unwell or injured unless an emergency hydrocortisone injection is administered within minutes. His latest treatment was a rituximab infusion. This again came with serious risks and side effects but so far seems to be keeping him in remission. This is the last treatment option for Lucas as all other treatments are no longer effective for him.

Despite all that he deals with on a daily basis, Lucas just gets on with life, and never complains (unless of course it affects his beloved footie). He barely remembers life without Nephrotic Syndrome so takes everything that it throws at him pretty much in his stride. He really is an incredible boy and we are immensely proud of how he has dealt with so much over the years. 

Sadly, there is no cure for Nephrotic Syndrome but the amazing NeST researchers in Bristol are currently making groundbreaking progress with gene therapy. The work they are doing sounds very promising and a cure is possibly not too far away. Unfortunately though, because Nephrotic Syndrome is so rare, research is desperately underfunded.

NeST not only carry out amazing research but as a charity, they provide the most amazing support for families going through the challenges and unknowns that this condition throws at them. There is no government funding for the charity so they rely purely on fundraising. 

So, to raise awareness and funds for NeST we've decided to take on the challenge of the Great Scottish Run Half Marathon in October. Any donations you can spare would be hugely appreciated and every penny will really make a difference.

This lovely video about Nephrotic Syndrome stars our very own (and very young and teeny) Lucas.
Nephrotic Syndrome Awareness