$19,247AUD raised
Thilini's Life Saving Treatment
Donation protected
Over the last 23 years I have watched my cheeky, larger than life little girl slowly deteriorate into a dangerously- ill adult. Please help us raise the money we need to take Thilini to Serbia for the treatment she desperately needs to save her life.
As a toddler, Thilini was bitten by several ticks while in the Whitsunday Islands and in northern New South Wales and she contracted Lyme disease. Since then, her health has steadily worsened and presently she is confined to a wheelchair and regularly has fits or seizures. Her mental state has deteriorated significantly and she is in excrutiating pain 24/7. Had Thilini been diagnosed when she first showed symptoms, her cure would have been a simple course of antibiotics.
From the age of three Thilini complained of things crawling in her ears and severe pain. She also complained of stabbing pains like things biting her while she was in bed. At age nine she started suffering from migraines which were extremely severe and caused her a lot of stress. By the age of 13 Thilini was also experiencing extreme pain in her hands and wrists. The little girl who loved to play piano and paint could no longer use her hands. She was diagnosed with Carpel Tunnel and we treated her with natural therapies and diet. This seemed to help for a couple of months but then the symptoms returned with a vengeance. We tried any natural therapy we could, occasionally getting relief for a few hours but soon we weren’t getting any positive results at all so we started seeing every and any medical specialist you could imagine. We were paraded infront of any number of Neurologists, Rheumatologists, even an Orthopaedic Surgeon, amongst many, and had countless MRI’s, nerve tests and invasive procedures, again to no avail. All of this completely drained our financial resources.
Thilini was told on more than one occasion she was making it all up. Similarly, when I asked specifically for Thilini to be tested for Lyme disease I was dismissed, told simply that Lyme disease does not exist in Australia.
For a long time Thilini was also under the care of a pain specialist and was put on every drug imaginable. These drugs sedated her but did nothing to control her pain and left her like a shadow of her real self. Despite all of this, Thilini managed to complete year 12 and 3 years of a Bachelor of Visual Arts degree at the Queensland University of Technology. Being her mother and having seen all of her suffering, I honestly don’t know how she managed, she is so resilient and such a fighter. These days Thilini is mostly bedridden and needs a wheelchair and a walker to get about and her whole existence is treatment and medical appointments.
In August 2013, after 20 years of going from doctor to doctor and getting nowhere, we finally found a doctor who was almost positive he knew what was wrong with Thilini. We desperately saved up almost $2000 to send blood to California to be tested. But nothing seemed to work out for us, the hospital lost the sample so we had to send a second one. Finally, the results came back and at last, we had a diagnosis. Thilini had tested positive to Lyme disease. After so many years, so many doctors and so many misdiagnoses it was such a huge relief to actually know what we were faced with. As well as Lyme disease, Thilini also has Bartonella, Babesia, Ehrlichia and Rickettsia which attack the nervous system and the brain and make treatment even more complex. As is common among Lyme sufferers, the list of symptoms Thilini presents with is very, very long.
Unfortunately, although well documented in many other countries, Lyme disease is not recognised in Australia so treatment is very hard to come by and almost prohibitively expensive. There is no support from Medicare or from health funds. In order for Thilini to get the treatment she needs, the two of us were forced to move interstate, away from my other three children and our friends and family, all the way from Brisbane to Sydney. We were fortunate to find a little apartment a short drive from the clinic where Thilini goes for treatment 4 times a week but being away from our entire support network is so very difficult.
After years and years of pain and suffering, we raised enough money to be able to fly to Germany to be treated at the St. George Hospital. By this time Thilini's health was so bad that she almost didn't make it through. She underwent two Hyperthermic treatments which, quite literally, saved her life, and for a few months, she did drastically improve. Sadly, due to the length of time it took for us to get a diagnosis, the illness was so deep-rooted, that long term treatment is proving to be ineffective. She's now sicker than she has ever been, and without immediate help, Thilini's life is in danger.
Through the incredible kindness of so many people, we are traveling to Malaysia in a few weeks for more Hyperthermia Treatment in the hope that this might make her strong enough to make the journey to Serbia for further treatment. A hospital in Serbia offers the world's best Stem-Cell Replacement Therapy which will hopefully provide Thilini with a new immune system. This route is likely to be her only chance. We are desperate and believe that this is Thilini’s last hope of making it through to the other side of her illness.
We are in dire need of help to finance the trip to Serbia. Being forced to seek medical help from overseas is extremely expensive, but it's our last resort. The medical treatment alone will cost AU$60,000. Due to Thilini needing to lay flat and use an oxygen tank we need to fly business class and all of these costs are so far out of our reach. And of course there is accommodation and insurance on top of that. We need to fly to Serbia as soon as possible, Thilini can not wait any longer.
My daughter has had her life stolen away from her for the past 23 years by an illness that the medical profession in Australia does not recognise. Lyme is a hideous and cruel disease causing Thilini endless suffering and a complete loss of independence. Overseas treatment is our only option.
As her mother, my priority is to get my child well again so that she can have a full and productive life. If you are able to, please make a donation, any amount is greatly appreciated . We desperately need to get Thilini to Serbia for life saving treatment.
With thanks from the bottom of my heart X
As a toddler, Thilini was bitten by several ticks while in the Whitsunday Islands and in northern New South Wales and she contracted Lyme disease. Since then, her health has steadily worsened and presently she is confined to a wheelchair and regularly has fits or seizures. Her mental state has deteriorated significantly and she is in excrutiating pain 24/7. Had Thilini been diagnosed when she first showed symptoms, her cure would have been a simple course of antibiotics.
From the age of three Thilini complained of things crawling in her ears and severe pain. She also complained of stabbing pains like things biting her while she was in bed. At age nine she started suffering from migraines which were extremely severe and caused her a lot of stress. By the age of 13 Thilini was also experiencing extreme pain in her hands and wrists. The little girl who loved to play piano and paint could no longer use her hands. She was diagnosed with Carpel Tunnel and we treated her with natural therapies and diet. This seemed to help for a couple of months but then the symptoms returned with a vengeance. We tried any natural therapy we could, occasionally getting relief for a few hours but soon we weren’t getting any positive results at all so we started seeing every and any medical specialist you could imagine. We were paraded infront of any number of Neurologists, Rheumatologists, even an Orthopaedic Surgeon, amongst many, and had countless MRI’s, nerve tests and invasive procedures, again to no avail. All of this completely drained our financial resources.
Thilini was told on more than one occasion she was making it all up. Similarly, when I asked specifically for Thilini to be tested for Lyme disease I was dismissed, told simply that Lyme disease does not exist in Australia.
For a long time Thilini was also under the care of a pain specialist and was put on every drug imaginable. These drugs sedated her but did nothing to control her pain and left her like a shadow of her real self. Despite all of this, Thilini managed to complete year 12 and 3 years of a Bachelor of Visual Arts degree at the Queensland University of Technology. Being her mother and having seen all of her suffering, I honestly don’t know how she managed, she is so resilient and such a fighter. These days Thilini is mostly bedridden and needs a wheelchair and a walker to get about and her whole existence is treatment and medical appointments.
In August 2013, after 20 years of going from doctor to doctor and getting nowhere, we finally found a doctor who was almost positive he knew what was wrong with Thilini. We desperately saved up almost $2000 to send blood to California to be tested. But nothing seemed to work out for us, the hospital lost the sample so we had to send a second one. Finally, the results came back and at last, we had a diagnosis. Thilini had tested positive to Lyme disease. After so many years, so many doctors and so many misdiagnoses it was such a huge relief to actually know what we were faced with. As well as Lyme disease, Thilini also has Bartonella, Babesia, Ehrlichia and Rickettsia which attack the nervous system and the brain and make treatment even more complex. As is common among Lyme sufferers, the list of symptoms Thilini presents with is very, very long.
Unfortunately, although well documented in many other countries, Lyme disease is not recognised in Australia so treatment is very hard to come by and almost prohibitively expensive. There is no support from Medicare or from health funds. In order for Thilini to get the treatment she needs, the two of us were forced to move interstate, away from my other three children and our friends and family, all the way from Brisbane to Sydney. We were fortunate to find a little apartment a short drive from the clinic where Thilini goes for treatment 4 times a week but being away from our entire support network is so very difficult.
After years and years of pain and suffering, we raised enough money to be able to fly to Germany to be treated at the St. George Hospital. By this time Thilini's health was so bad that she almost didn't make it through. She underwent two Hyperthermic treatments which, quite literally, saved her life, and for a few months, she did drastically improve. Sadly, due to the length of time it took for us to get a diagnosis, the illness was so deep-rooted, that long term treatment is proving to be ineffective. She's now sicker than she has ever been, and without immediate help, Thilini's life is in danger.
Through the incredible kindness of so many people, we are traveling to Malaysia in a few weeks for more Hyperthermia Treatment in the hope that this might make her strong enough to make the journey to Serbia for further treatment. A hospital in Serbia offers the world's best Stem-Cell Replacement Therapy which will hopefully provide Thilini with a new immune system. This route is likely to be her only chance. We are desperate and believe that this is Thilini’s last hope of making it through to the other side of her illness.
We are in dire need of help to finance the trip to Serbia. Being forced to seek medical help from overseas is extremely expensive, but it's our last resort. The medical treatment alone will cost AU$60,000. Due to Thilini needing to lay flat and use an oxygen tank we need to fly business class and all of these costs are so far out of our reach. And of course there is accommodation and insurance on top of that. We need to fly to Serbia as soon as possible, Thilini can not wait any longer.
My daughter has had her life stolen away from her for the past 23 years by an illness that the medical profession in Australia does not recognise. Lyme is a hideous and cruel disease causing Thilini endless suffering and a complete loss of independence. Overseas treatment is our only option.
As her mother, my priority is to get my child well again so that she can have a full and productive life. If you are able to, please make a donation, any amount is greatly appreciated . We desperately need to get Thilini to Serbia for life saving treatment.
With thanks from the bottom of my heart X
Donations
Organizer
Jenny Pym
Organizer
North Wahroonga, NSW