Genetic disease could blind twins
The Seeley twins risk going blind, as their health continues to deteriorate, thanks to a rare genetic disease, and doctors struggle to find a diagnosis.
A sudden epilepsy attack one hot afternoon at a swimming pool last year forever changed the lives of six-year-old twins in the north of Pretoria.
“We took Kaylea to casualties where she was admitted,” said Deolien Seeley, the mother of the twins.
This was the first time Kaylea was taken to the hospital. The “attack” in the swimming pool, while luckily wearing a life jacket, left her paralyzed and her right leg stiff.
“She spent seven weeks in and out of the hospital and was seen by multiple doctors.”
Today, the Seeley twins risk going blind.
This was as their health continues to deteriorate, thanks to a rare genetic disease, as doctors struggle to find a diagnosis.
Lumbar punctures, magnetic resonance imaging (MRI) and multiple blood tests have all become routine for the twins since Kaylea’s attack.
“The paediatrician performed tests that showed that the left side of the brain is swollen. Kaylea had experienced an epilepsy attack and the cause of it was unknown.”
Kaylea was seen by a paediatrician, a neurological paediatrician and eye specialists. This was as she had to go through three lumbar punctures, and three MRIs while a large amount of blood was drawn.
“Kaylea lost her sight at one point due to the pressure on her eyes and the brain because of all the tests.
“Pediatricians still cannot determine what is wrong with her. All they know is that it is a neurological immune disease and she was diagnosed with optic neuritis.”
Optic neuritis occurs when inflammation damages the optic nerve.
“She has to ingest eight cortisone pills, Azathioprine and 3.6ml Epilim that made drastic changes to her body and mind.”
In June 2022, the doctors had to put Kaylyn through the same medical tests and treatment as she showed the same symptoms as her sister.
A visit to the eye specialist showed that Kaylyn has pressure on her eyes and only has 50% vision.
“She was admitted immediately.” Like her sister, blood tests were taken and MRIs and lumber punctures were done.
“A neurological paediatrician confirmed that Kaylyn is showing the same symptoms as Kaylea as her diagnosis is partly also optic neuritis, which is said to be genetic.”
Eye specialist Dr Hamza Tayob said that Kaylea’s sudden loss of vision in December 2021 required multiple neurological and systemic investigations.
“Despite numerous tests and treatment plans, the diagnosis is inconclusive. Treatment is not yet optimised.
“Unfortunately, in mid-2022 symptoms and signs of neurological and visual impairments had begun on Kaylyn as well.”
Neurological paediatricians, professors and eye specialists are all working to determine what is wrong with the twins and what causes their symptoms.
Professors in Canada have jumped on board to find a solution. There is a possibility that tests will have to be done there as well.
The twins’ health has put a big strain on the family’s finances because the medical aid does not cover some of the tests.
This has compelled the family to start a fundraising campaign for the twins’ medical costs.
A colourful fun feast will take place of September 3 at the Hillside GC and driving ranger.Everyone is encouraged to join the family for a day out covered in bright coloured paint.
Paint will be sold on the day
For more information call Nadine on 084 595 8650
The Manzi Maningi private game lodge will be hosting a camping weekend on September 9 to 11. You can help the family in need while you enjoy a weekend away.
For more info, contact 083 566 3318 or email info@manzimaningi.co.za .
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