Our Stories

Noel's Story

Noel was diagnosed with Minimal Change Nephrotic Syndrome in 2009 just before his ninth birthday. He is being treated in Rotterdam, Netherlands – our hometown. He is steroid resistant and lactose intolerance.

Noel is in stable clinical condition, but always feeling tired with some edema in his legs and eyes. The doctors suspect he is developing FSGS.

Noel has been on a great deal of medication, including rituximab, prednisolone, tacrolimus, ramipril, hydrochlorothiazide, calcium-D, Lipitor and amlodipin.

He has to deal with the consequences of his disease on a daily basis. Always feeling tired, sometimes he can not go to school because he is sick. There are a lot of visits to the hospital. It has a tremendous impact on our family, but we stay positive and hope the future will bring answers.

Ask told by Noel’s mom, Gaby.

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