Our daughter Megan was diagnosed with FSGS / nephrotic syndrome when she was six years old. It is a rare disease which causes scarring in the kidney, if not treated successfully it can lead to kidney failure. Complications of nephrotic syndrome include infection, swelling (oedema) and an increased risk of blood clots. After diagnosis Megan's first relapse of nephrotic syndrome put her in hospital for three weeks, she became so swollen she couldn't even stand and was in constant pain due to swelling. She endured needles daily and was hooked up to an IV for hours every day. She ended up as a high dependency patient, we couldn't believe what had happened to our happy, healthy girl. She was transferred to Nottingham Children's specialist renal centre and had a biopsy which showed FSGS. There is no cure and treatments are often toxic, increase the risk of infection, can reduce growth rate and bone density and some even increase the risk of diabetes and cancer.

Treatments for FSGS suppress the immune system, we had three relatively stable years with a drug called tacrolimus, however one side effect is it is toxic to the kidney. It was stopped after Megan showed a reduction in kidney function in October 2016. The drug that saved her kidneys was now hurting them.

They do not know what happens in the body to cause nephrotic syndrome but it is thought to be a faulty immune system. This means that any cough / cold / virus or bug can cause a relapse. After stopping tacrolimus Megan caught a sickness bug and relapsed, four months on she is still dealing with the consequences of what should have been a 24 hour bug. Megan has been on medication to try and put her into a long term remission but after three relapses in short succession we are still not there yet. Her most recent relapse has meant taking 18 tablets a day, we are now waiting for remission and hoping the increase in dosage will work this time. 

Please help us fund research into this rare kidney disease. We need kinder treatments and ultimately a cure!

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