Increase Paediatric Palliative Care in KZN, SA

Hi! Its really exciting to share our news with you again. 

A while back I introduced you to one of our kids, Thando. He is a 12 year old boy with a condition called Polymyositis. This is an uncommon  inflammatory disease that causes muscle weakness affecting both sides of the body. There is no cure for this disease and currently Thando has some use of his fingers and can move his head and neck. One of our greaest challenges has been keeping Thando stimulated at home. Given his condition he cannot take himself outside in his wheelchair, he cannot feed himself, he cannot go to school. Thando relies on his family for everything.

We have tried to get him back to school but the distance is too great and Thando is exhausted before he gets there. In addition to this, because he cannot do anything for himself, he is reliant on someone at school to wheel him around. This has not been that easy.

Pallliative care is not just about end of life care or care for terminal conditions. It also invovles providing comfort to the child's mind, body and spirit. Thando was becoming depressed and we needed to find a way to make him more independent and treat his mind and his spirit.  After many months of negotiating and some help from the local hospital's Occupational Therapist, Thando's dream was finally realised - a motorised wheelchair. With this Thando is able to mobilise himself by using his chin. We were all speechless as he left the hospital on his own for the first time ever! His smile is something we will all remember. 

We have been blessed with donations to help make Thando's home more wheelchair friendly so that he can go outside when he wants to. Thank you to all those who made this possible.

Thando is experiencing independence for the first time in a very long time. He can move himself around when he wants to and no longer has to wait for someone to help him. Our next challenge is getting him back to school!