Racing for Alyssa and Ash
Donation protected
At the young age of 11, my daughter, Alyssa, was diagnosed with a crippling condition that changed our lives.
Alyssa was diagnosed with Juvenile Idiopathic Arthritis (JIA).
Juvenile Idiopathic Arthritis is a condition that not everyone is familiar with. When most people hear Arthritis, they think of the elderly, but little do they know, kids get Arthritis too. JIA is an Auto-Immune condition that causes inflamation, redness, heat and pain in a childs joints. It can be so immobolising, children can end up in wheelchairs. A childs bone becomes weak and damaged therefore easier to break. It can happen to anyone, at any age, even babies.
1 to 4 in 1,000 children in Australia live with JIA and that statistic is forever increasing. There is NO cure.
Alyssa is now 15 years old and is a strong courageous young lady.
Alyssa has been taking medication daily since being diagnosed, one medication, Methotrexate is an extremely drug that is also used for Chemo-Therapy. This drug has so many nasty side effects like hair loss, nausea and complications with heart and liver. She has had two lots of injections in her wrists and ankles. Alyssa's JIAa is in her ankles, wrists. neck, knees, fingers and toes. JIA can also affect a childs eyes, lungs, liver and other organs. Alyssa really needs another lot of injections as her medication is just not sufficient, but unfortunately the injections cost the government $20,000 each time they are done so there is a very strict criteria for who is eligable, we are not anymore.
I have been racing triathlons for 22 years this year and I have completed 4 Ironman triathlons, but no race compares to the pain Alyssa goes through each day. Alyssa was once a sporty, active kid that loved the outdoors. She loved playing Basketball, Squash and she loved to Swim. Unfortunately Alyssa had to stop playing Basketball and Squash because of the impact they have on her joints, however she still loves to swim and her passion is horse riding. Alyssa and I train in our local pool twice a week and Alyssa hopes one day that she will be able to do a Triathlon.
Alyssa's dream job is to one day become a Police Officer, she is forever remaining positive and hoping to persue some of her dreams.
In just two weeks, I will be racing my 6th 70.3 (Half) Ironman Triathlon in our hometown, Port Macquarie. I have started a campaign called, Racing for Alyssa and Ash. My brother will be joining me for his first 70.3 and we will be wearing race suits with our campaign name on them.
On this joruney we have met many great people, two of which is Ashley Wilson and her mum Jenny Batten. Ashley is also suffering from Juvenile Idiopathic Arthritis.
This is her story:
Ashley has only been diagnosed early this year at 14 with JIA even though she has had symptoms for a number of years prior .This was the start of an illness that would change my daughter's life .Countless appointments already to the specialist , doctors , occupational therapist , Physio , myotherapy and endless research of the disease that I always associated with older people . I could not believe my beautiful girl had arthritis, yes kids get arthritis too and there is no known cure . It is all very new to our family and we are still coming to grips with this debilitating disease that manifests itself in so many different ways including pain, headaches, swelling, tiredness and nausea a side effect of methotrexate which is a immuno suppressive drug which is also used for chemo treatment just one of the medications she takes daily .Ashley also has been diagnosed with dermamyositis which is a rare auto immune disease which causes inflammation of the skin and muscle tissue. Ashley was always active playing representative touch football ,netball , gymnastics and dancing however this has all stopped due to JIA which affects Ashleys feet , ankles,knees , wrists , elbows and fingers . We hope one day Ashley will be back playing sport and doing the things she loves . At an age where these two beautiful girl should be out enjoying life instead they have to plan weekends around taking medication and the nausea that goes with it . I hope we can raise enough funds to make a difference in finding a cure for this devastating disease which affects so many children , our beautiful daughters included .
We are hoping to raise money for much needed funds and awareness for children living with Juvenile Idiopathic Arthritis. Hopefully one day every child suffering will be able to have the injections as they give so much relief and in the future, maybe one day they will find a cure.
Alyssa was diagnosed with Juvenile Idiopathic Arthritis (JIA).
Juvenile Idiopathic Arthritis is a condition that not everyone is familiar with. When most people hear Arthritis, they think of the elderly, but little do they know, kids get Arthritis too. JIA is an Auto-Immune condition that causes inflamation, redness, heat and pain in a childs joints. It can be so immobolising, children can end up in wheelchairs. A childs bone becomes weak and damaged therefore easier to break. It can happen to anyone, at any age, even babies.
1 to 4 in 1,000 children in Australia live with JIA and that statistic is forever increasing. There is NO cure.
Alyssa is now 15 years old and is a strong courageous young lady.
Alyssa has been taking medication daily since being diagnosed, one medication, Methotrexate is an extremely drug that is also used for Chemo-Therapy. This drug has so many nasty side effects like hair loss, nausea and complications with heart and liver. She has had two lots of injections in her wrists and ankles. Alyssa's JIAa is in her ankles, wrists. neck, knees, fingers and toes. JIA can also affect a childs eyes, lungs, liver and other organs. Alyssa really needs another lot of injections as her medication is just not sufficient, but unfortunately the injections cost the government $20,000 each time they are done so there is a very strict criteria for who is eligable, we are not anymore.
I have been racing triathlons for 22 years this year and I have completed 4 Ironman triathlons, but no race compares to the pain Alyssa goes through each day. Alyssa was once a sporty, active kid that loved the outdoors. She loved playing Basketball, Squash and she loved to Swim. Unfortunately Alyssa had to stop playing Basketball and Squash because of the impact they have on her joints, however she still loves to swim and her passion is horse riding. Alyssa and I train in our local pool twice a week and Alyssa hopes one day that she will be able to do a Triathlon.
Alyssa's dream job is to one day become a Police Officer, she is forever remaining positive and hoping to persue some of her dreams.
In just two weeks, I will be racing my 6th 70.3 (Half) Ironman Triathlon in our hometown, Port Macquarie. I have started a campaign called, Racing for Alyssa and Ash. My brother will be joining me for his first 70.3 and we will be wearing race suits with our campaign name on them.
On this joruney we have met many great people, two of which is Ashley Wilson and her mum Jenny Batten. Ashley is also suffering from Juvenile Idiopathic Arthritis.
This is her story:
Ashley has only been diagnosed early this year at 14 with JIA even though she has had symptoms for a number of years prior .This was the start of an illness that would change my daughter's life .Countless appointments already to the specialist , doctors , occupational therapist , Physio , myotherapy and endless research of the disease that I always associated with older people . I could not believe my beautiful girl had arthritis, yes kids get arthritis too and there is no known cure . It is all very new to our family and we are still coming to grips with this debilitating disease that manifests itself in so many different ways including pain, headaches, swelling, tiredness and nausea a side effect of methotrexate which is a immuno suppressive drug which is also used for chemo treatment just one of the medications she takes daily .Ashley also has been diagnosed with dermamyositis which is a rare auto immune disease which causes inflammation of the skin and muscle tissue. Ashley was always active playing representative touch football ,netball , gymnastics and dancing however this has all stopped due to JIA which affects Ashleys feet , ankles,knees , wrists , elbows and fingers . We hope one day Ashley will be back playing sport and doing the things she loves . At an age where these two beautiful girl should be out enjoying life instead they have to plan weekends around taking medication and the nausea that goes with it . I hope we can raise enough funds to make a difference in finding a cure for this devastating disease which affects so many children , our beautiful daughters included .
We are hoping to raise money for much needed funds and awareness for children living with Juvenile Idiopathic Arthritis. Hopefully one day every child suffering will be able to have the injections as they give so much relief and in the future, maybe one day they will find a cure.
Organizer
Nathan Pensini
Organizer
Thrumster NSW
