Limari Rouxlé van Romburgh was born on the 7th of March 2017. At 3 months old she had a chest/respiratory infection. She was listless and very pale. Her sleeping patterns were disturbed and she cried a lot. When she was taken to the ER because the original course of antibiotics had been completed, the Dr immediately called the paediatrician. He knew that she was gravely ill. After many tests she was diagnosed with #HUS. She had several blood transfusions, but relapsed time after time. She was then referred to Dr Errol Gottlich who made the aHUS diagnosis.
Limari just became more and more ill. She had a #platelet count of 33 and a #hemoglobin of 6. She received 1 dose of #Soliris which was in the country. After genetic testing and approval of the South African Medical Council and the permission of Alexion, Limari could receive Soliris. However, this process is filled with challenges. Limari cannot receive Soliris every 2 weeks as required as the cost cannot be covered by her parents. So she only receives the medication when she relapses.
She has relapsed twice since the original diagnosis. Limari owes her life to the dedication of the Drs who have treated her. This debilitating disease can cause strokes and organ damage. Limari is currently doing well. She last relapsed end of February. This is written from the perspective of a care giver and not a medical professional.
Regards
Erika Pelser (maternal grandmother )
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