Fundraiser for seven-year-old with rare condition

SUPPLIED

Gather a party of friends and head for Hillary on Friday, when a fundraiser is being held to benefit a seven-year-old Durban girl with a rare neuropathic disease.

Kaylee Andrew is the only person in the country to be diagnosed with Gaucher Disease Type 3, which means that she cannot produce the enzyme that breaks down glucosylceramide, a component in cell walls.

As a result, Kaylee is suffering from a progressive loss of brain function, and increasingly severe seizures.

In a bid to raise money for an electric suction machine as well as a paediatric walker which will improve Kaylee’s quality of life, her family will be hosting an evening of dancing. Boerewors rolls will also be available at the event.

Her aunt, Brenda de Broize, said Kaylee did not get much support, being the only person in the country with the disease. “She is seven years old and weighs only 14kg. She cannot crawl, walk, talk, or eat solids,” she said.

“At one stage she was able to crawl, but suffered a seizure and ended up knocking her front teeth out. Today her only way of getting around is in a walker, due to her shaking.”

Seven-year-old Kaylee Andrew is the only person in South Africa to suffer from Gaucher Disease Type 3, a rare neuropathic disease which causes severe seizures.

Her primary motor cortex has been damaged, resulting in her having stiff legs that do not move well, and the neurons that control swallowing and the voice box have been affected, resulting in several choking episodes.

“I have seen her father administer CPR on Kaylee, and watching him try to save his little girl was very hard to swallow,” De Broize said.

Kaylee cannot move her eyes, and so has to move her head to look around.

Two weeks ago, Kaylee’s doctor at Westville Hospital, Dr Andre Botha, said her condition had worsened, meaning she could end up having a massive seizure and never come out of it.

“One doesn’t know, as doctors are learning from her as well. All we can do is thank God for the time we have with her and make her life as comfortable as we can for now.”

Botha, who has been treating Kaylee since she was born, said despite her dramatic handicaps, she was a very affectionate and pleasant little girl.

“I fully support the effort to provide her with a walker as this would have the potential to give her some degree of independent mobility,” he said.

“An electric suction machine would also allow her family to better assist her when she is unable to swallow the secretions from her mouth, and would considerably lessen her parents’ distress when she suffers complex seizures.”

The fundraiser starts at 6pm sharp at High Field House, 11 Kinmount Avenue, in Hillary.

Entrance fee is R20 per person.

Call Brenda de Broize at 076 477 7701 to book.