Bereaved mom to help kids with rare disease

2010-10-13 00:00

AN Amanzimtoti woman’s loss of her child to a very rare disease has prompted her to host a golf day to create awareness of Batten disease and raise funds for the few families in South Africa who are living with the disease.

Said Pam Jooste, “I want to offer support to families who have children with Batten disease. Having lost my precious daughter, Shanade, to the disease, I understand the financial and emotional strain these families are faced with each day.”

Jooste said Batten disease s “a degenerative brain disease that takes away the childhood and then takes away the child.”

It is genetic and both parents have to have the same defective gene for a child to have the disease. Even then, there is a 25% chance the child will contract it.

There is no cure and the disease is fatal. So far only 11 families in South Africa have been affected by the disease (or been correctly diagnosed) according to Jooste, and five are living at the moment.

“In 2007, I ran the Comrade to raise funds for these children and the SA Batten Fund was formed. I want to help ease the financial burden these families are faced with, but most importantly I want to ensure these special children’s needs are catered for. Unfortunately medical aid schemes do not cater for these special needs,” said Jooste.

“The Batten Fund supplies suction machines and specialised wheelchairs to the families and at present caregiver fees are covered by the fund.

“Batten disease is cruel and unmerciful. It strips a child of everything we take for granted and they require 24-hour care.”

Jooste explained that children with the disease lose the use of their hands, cannot sit, stand or walk, and therefore become bed-ridden.

“They lose the ability to chew and swallow and require a G-tube [fitted to the stomach] through which liquidised food or [food supplements] are given,” she said.

“They lose their eyesight. They have uncontrollable seizures and have to take various medications. They have bladder and bowel problems and in some cases have to be catheterised. They have to be constantly turned to prevent bedsores.”

Jooste can be reached for details at 083 306 2434 or e-mail at

In aid of the families in South Africa with children suffering from Batten disease, Jooste is organising a golf day for Friday, October 22, at the Umkomaas Golf Club. Every player will receive a sleeve of three golf balls.

Entry is a 4 ball, R250 per player. A hole can be sponsored for R400 and donations are welcome.

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