We are the parents of a very special child Tumisho. He was born at Netcare Femina on the 27 October 2010 ( Born in the year when South Africa was honored to host a special 2010 World Cup). He was the biggest and chubbiest baby in the NICU. His smile will draw all the attention of the nursing staff. His life made a turn when his cardiologist found out that he had a heart murmur ( Confirmed as Mitral Valve Prolapse). And was also born with inguinal hernia.
After spending two weeks in NICU, he was discharged with six months follow up with cardiologist. During his first year he completed his milestone like any other child except that he never crawled. At home he was a very energetic and busiest child in the house and very enjoyable. MPS 2 was suspected by his cardiologist and confirmed at 2 years. This was the moment that shook us with disbelief as we never had of this condition before even though we were medical professionals.
As parents we went through the entire google searches looking for information and answers regarding MPS and everything was just doom and gloom but this did not stop us for looking for any possible solution elsewhere until we came across Kelly du Plessis ( Rare Disease SA) together with Genzyme and his Paediatrician.
Tumisho was a strong willed child and nothing stopped him from doing what he wanted to do. He was a fighter aka ( John Cina), even though his body was restricting him ( sometimes he will fall and hurt himself but this did not deterred him from doing what he wants). He will bring joy to anyone he comes across with his smile. He had his love for music especially gospel and jazz ( His favorite was “Alfa and Omega” when this song plays on radio or TV his face will lighten up and sing along. In the church he was always ushering everyone who comes in. No one will dare bully Tumisho as his back hand will do magic surprisingly and tears will roll without a cry. He would have have been a great body guard for his younger brothers.
Tumisho had a fighting spirit that says I want to live till the end. Indeed he was our warrior.
To all rare disease warriors and families, here was one of them who portrait the zeal to live.
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