Theos NMO Fight
Donation protected
Our 9 year old son Theo Thomas was diagnosed with a very rare disease called Neuromyelitis Optica (NMO) on December 14th 2019 (aged 8) It is an incurable autoimmune disease of the central nervous system that destroys the protective covering of the optic nerves and spinal cord causing vision loss/blindness and/or paralysis in 100% of people with this disease.
This disease is so rare that only approximately 150 Australians have been diagnosed. It's believed that Theo is the only boy his age in Australia to be diagnosed with NMO and estimated to be 1 in 18 million.
Please read Theos story below.
Theos fight began on November 16th 2019 when he suddenly began to lose vision while competing in Arenacross at his local motocross club (Lightweight Motorcycle Club) when after his first race he said his vision in his left eye was blurry (thinking it was a smudge on his goggles we didn't think much of it at the time).. 2 days later I received a call from his teacher saying she was concerned with his vision and said he couldn't read the white board. The following day I took Theo to a local optometrist where they noted significant vision loss in both eyes, a referral was written up to see an ophthalmologist and he was sent for a brain MRI, where they found Optic Neuritis in his optic chiasm affecting 3 sections of his optic nerves. Unfortunately the imaging company failed to forward the results to the ophthalmologist, which caused a long delay in beginning treatment. Theo was rushed to Perth Children's Hospital where they found he had lost 100% of his vision in his right eye and only having 6/24 vision in his left eye. A lumbar puncture (spinal tap) and blood tests were done which confirmed Neuromyelitis Optica, he then had another MRI on his spine which confirmed he had Myelitis inflammation in his spinal cord spanning 4 vertebrae which is now causing paralysis in his right arm. They immediately began IV steroid treatment which improved his vision slightly, he was discharged from hospital after 5 days on 900mg prednisone but was rushed back to Perth Children's Hospital 2 days later unable to see, suffering severe pain in his head and eyes as well as vomiting... Sadly the results weren't good, he has an intolerance to steroids which is the main treatment for NMO. They immediately began administering IV immunoglobulin transfusion and after 4 days at PCH Theo was discharged from hospital with perminant vision loss and still has some paralysis in his right arm.
This disease doesn't go away, it doesn't have a cure with 25- 50% of people with NMO being paralysed and in a wheelchair within 5 years and I've been advised that it has an average lifespan of around 17 years.
If you could spare a few dollars to help us with his ongoingmedical costs we will be ever so grateful.
(Please read updates below, there has been quite a few since this page was created)
Thank you,
Judd and Christina Thomas
This disease is so rare that only approximately 150 Australians have been diagnosed. It's believed that Theo is the only boy his age in Australia to be diagnosed with NMO and estimated to be 1 in 18 million.
Please read Theos story below.
Theos fight began on November 16th 2019 when he suddenly began to lose vision while competing in Arenacross at his local motocross club (Lightweight Motorcycle Club) when after his first race he said his vision in his left eye was blurry (thinking it was a smudge on his goggles we didn't think much of it at the time).. 2 days later I received a call from his teacher saying she was concerned with his vision and said he couldn't read the white board. The following day I took Theo to a local optometrist where they noted significant vision loss in both eyes, a referral was written up to see an ophthalmologist and he was sent for a brain MRI, where they found Optic Neuritis in his optic chiasm affecting 3 sections of his optic nerves. Unfortunately the imaging company failed to forward the results to the ophthalmologist, which caused a long delay in beginning treatment. Theo was rushed to Perth Children's Hospital where they found he had lost 100% of his vision in his right eye and only having 6/24 vision in his left eye. A lumbar puncture (spinal tap) and blood tests were done which confirmed Neuromyelitis Optica, he then had another MRI on his spine which confirmed he had Myelitis inflammation in his spinal cord spanning 4 vertebrae which is now causing paralysis in his right arm. They immediately began IV steroid treatment which improved his vision slightly, he was discharged from hospital after 5 days on 900mg prednisone but was rushed back to Perth Children's Hospital 2 days later unable to see, suffering severe pain in his head and eyes as well as vomiting... Sadly the results weren't good, he has an intolerance to steroids which is the main treatment for NMO. They immediately began administering IV immunoglobulin transfusion and after 4 days at PCH Theo was discharged from hospital with perminant vision loss and still has some paralysis in his right arm.
This disease doesn't go away, it doesn't have a cure with 25- 50% of people with NMO being paralysed and in a wheelchair within 5 years and I've been advised that it has an average lifespan of around 17 years.
If you could spare a few dollars to help us with his ongoingmedical costs we will be ever so grateful.
(Please read updates below, there has been quite a few since this page was created)
Thank you,
Judd and Christina Thomas
Organizer
Christina Thomas
Organizer
Secret Harbour WA
