I am running the Ards half marathon to raise money for NesT (Nephrotic syndrome trust)

Last June, my son Frankie was diagnosed with Nephrotic syndrome and this past year - with constant hospital trips, relapses, a biopsy, appoitment after appointment - has been eye opening. Nephrotic syndrome isn't commonly known and it was a shock for all of us when he was diagnosed with something that none of us in our family had ever been made aware of nevermind the fact there is no cure currently.

As I am writing this, Frankie has just recently entered remission again last week and we are hoping that he is on the right track now, he's on a different dose of his most recent medication and is being weined off his steroids again. I am running this marathon to raise awareness and money for nephrotic syndrome.

For anyone who doesn't know what it is, If you’ve got Nephrotic Syndrome, the filters in one or both of your kidneys are ‘leaky’ which results in the transfer of protein from your blood to your urine. Normally, urine doesn’t contain any protein but people with NS develop Ôproteinuria’ which simply means there is protein in your pee. Your body knows there’s something wrong when it realises it’s peeing protein so it reacts by retaining water, which may lead to:

Developing an infection

Since you can lose antibodies (the good proteins which help you fight off infections) in your urine.

Developing thrombosis

This is a thickening or clotting of the blood vessels and is also common in people with NS since there may be a change in the balance of proteins in your blood that would normally prevent this happening

Having low levels of vitamin D: since there is a loss of vitamin D-binding proteins in the bloodstream.

Developing anaemia

Since the proteins that normally help to carry iron around your bloodstream are off doing other things. If left untreated, Nephrotic Syndrome can develop into kidney failure meaning you may need a kidney transplant. Transplants are normally successful but there is still a small chance that the condition could return. That’s why it’s so vital to help find a cure.

Any donation big or small is appreciated.

Thank you.