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PATIENT STORIES

Meet Riyaaz

Riyaaz, who is now 3 years old, was born prematurely at 31 weeks, weighing only 2.1kgs. According to doctors, he was a healthy baby despite his early birth but his mom Aneesa was not convinced. Little Riyaaz kept losing weight and by the time he was 7 days old his weight had dropped to a staggering 1.7kgs. He started vomiting and Aneesa immediately took him to their local family doctor. She was advised to stop breastfeeding him and to introduce formula instead.

By day 9, Aneesa knew there was something seriously wrong with her son and she brought him to the Emergency Unit at the Red Cross War Memorial Children’s Hospital, where they started treating his symptoms immediately and carried out genetic tests to find out the cause of his illness.

Riyaaz was admitted to a high-care ward and stayed there for a few weeks while tests were being conducted. After a month of anxious waiting, he was diagnosed with a rare genetic disorder called Pseudohypoaldosteronism – Type 1, which is a condition characterised by problems regulating the amount of sodium in the body. Through this electrolyte imbalance, Riyaaz very easily loses salt, which causes his sodium levels to drop and his potassium levels to increase.

In order to manage this disease, he needs to drink at least four litres of water each day to prevent dehydration and extra fluid is pumped into his system though a gastrostomy tube while he sleeps. He is admitted back to the Hospital every few months when his vomiting and dehydration becomes severe, and has to see the doctors every two weeks for a check-up.

His mother has learned to identify the signs of dehydration through Riyaaz’s sunken eyes, tired spells and flaccid skin. Because he can’t exercise like a normal little boy should, he often needs to go for physiotherapy to develop his muscles.

Aneesa is so grateful for the staff at the Hospital, and says she couldn’t go through this without them. They have become a family to her in helping her boy on his journey back to childhood.

If you have a family member or friend who suffers with the same disease as Riyaaz, please contact us so we can put you in touch with Aneesa. She would like to stay in touch and share their experience, as there is no other diagnosis in South Africa that she is aware of.

 

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