Saturday, April 13, 2024

From setback to a positive life purpose

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15 year old Natasha Astill who suffers from Fetal Valproate Syndrome is excited about going on a pilot regional exchange programme for students with disability.

Year 11 Pakuranga College student Natasha Astill is excited about being part of a pilot programme for students with disabilities.

The 15-year-old is the first person to be going on a regional exchange to Whangarei through Achieve 2B.

Founded by Julia Hartshorne who has mild cerebral palsy, Achieve 2B is an intercultural exchange programme that facilitates national and international exchanges for young people with disabilities in New Zealand.

Natasha says she is looking forward to meeting her host family who live on a farm with two girls and two boys.

“The exchange programme will help me to be independent and boost my confidence.”

Natasha suffers from Fetal Valproate Syndrome, a rare congenital disorder caused by exposure of the fetus to valporic acid during the first three months of pregnancy.

Valporic acid is an anti-convulsant drug used to control seizures in the treatment of epilepsy.

Natasha’s mother Denise, who was on medication for epilepsy during her pregnancy, gave birth to twins who suffer from the syndrome. They were diagnosed aged four.

Symptoms of the disorder include distinctive facial features and other musculoskeletal abnormalities.

Looking at Natasha it is difficult to tell that she has visual processing and speech difficulties and other autistic traits.

She’s had her feet and hammer toes (a deformity of the middle toes which are bent at the middle joint resembling a hammer) operated on twice and is due for more surgery to straighten her toes.

The teenager has been making remarkable progress in the last eight months due to an assistance technology programme and 20 hours of teacher aide every week.

Natasha with her mother Denise Astill celebrating the second birthday of Foetal Anti-Convulsant Syndrome NZ. Photo supplied.

Natasha uses a remote microphone hearing aid which receives a speech signal from a transmitter microphone that can be worn around the neck by a parent, teacher or coach.

It enables her to process the information better as the speaker’s voice is delivered clearly into her ears.

Natasha says that she was keen to go to Japan on an international exchange programme when she was in Year 8 but was turned down.

“I was really disappointed then because they didn’t allow a teacher aide. Now I am so excited that my exchange programme of four weeks starts from March 3.”

Natasha’s mother, who has been her biggest cheerleader, says her daughter has made remarkable progress.

“She has found a voice and can express her opinion very respectfully. I want my daughter to be a part of the community she lives in,” she says.

Natasha’s was the first case of Fetal Valproate Syndrome to be accepted by Accident Compensation Corporation (ACC ) for treatment.

ACC will provide an exchange teacher aide and home support hours during the exchange programme.

Mrs Astill says this is a major breakthrough case with ACC.

“I had consulted two specialists prior to taking the medicine when I was pregnant and both of them said it was safe for my unborn child,” she points out.

After going through a long period of guilt and grieving, she later resolved to snap out of it and find out more information about the syndrome.

“There was no one who could help me in New Zealand but I did finally get some information from the UK after which I thought, `what can I do to help others trying to cope with the same disorder’?” she says.

Two years ago, she founded Foetal Anti-Convulsant Syndrome NZ, a charity organisation focusing on support, education and awareness.

Wanting to turn around the debilitating setback into a positive life purpose, she toured the North and South Island to educate those affected by it.

Mrs Astill is now working collaboratively with ACC to bring out a toolkit to ensure female patients are better informed about the risks of taking valporate medicines during pregnancy.

“It’s about informed consent in healthcare,” she says.


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