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Let's help Gene and Dee

  • Update for 15/08/2014 - Thank you Everyone and Special Shout out

      15 August 2014

    We would like to thank all our many Special Givealittle friends who have supported us through this journey enabling us to fund Genefs treatment . The Tocilizumab treatment has enabled Gene to continue working in his role as a Clinician. He will also graduate with his PGDip in Counselling in September. Thank you to those who have made this possible Jacqui Dillon CEO SAFE Network Inc., Dorothea Lewis and Aileen Cheshire the Narrative Therapy Course lecturers at Unitec Auckland. Special thanks go out to our SPARK Connect whanau, James Allison General Mgr Technology Operations, Duncan Perreau Head of Technology Operations, Candice Welch Spark Connect PA, Norma Tivoli Spark Connect PA and of cause the Spark Connect gAuntiesh ! Without these wonderful people our Givealittle charity page would not have happened. Also Yvonne Goodwin http://www.taratidesignltd.com, who donated a beautiful Korowai and various other pieces of art and Marie James Engraving Whangaparaoa for donating your time and efforts. Special thanks to our dear friends Brent and Laverne Rush - McDonalds Whangaparaoa and Orewa who donated quietly in the background. Our beautiful friends Ray and Sue who maintain our lawns and gardens. Gene continues to require treatment and is being tested, scanned poked and prodded. We continue to fight Pharmac for funding for Tocilizumab even though he has been tested positive for Castlemans disease. We still await results for possible Heavy Chain disease. Our journey remains a long one but Gene is a fighter and battles exhaustion and all the symptoms that comes with Castlemans. Jacqui Dillon and our wonderful friends at SAFE have been an huge help in ensuring Genefs health is placed at the forefront. This has enabled Gene to continue working along with the treatment.

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  • Update for 14/08/2014

      14 August 2014

    14/08/14 Genefs Update: Gene has had a few treatments now and the Tocilizumab treatment enabled him to continue to work in the SAFE Network organisation as a Clinician. He has received positive results from the treatment in which we are so grateful for the generous donations from so many wonderful people. April 2014 - Dr Simpson, the Clinical Head Malignant Haematology at North Shore Hospital, sent Genefs biopsy to Specialist around the world. The world renowned specialist for Castlemans disease in New York has confirmed that he does have this disease in its purest form. May 2014 - Two weeks later the New York Specialist also suspects Gene of having Gamma heavy chain disease in parallel with Castlemans disease both are rare. They are currently testing to see if the diagnosis is correct. We are still awaiting the results since May. He continues to have tests, scans etc as he is a mystery to the medical profession. About Heavy Chain Disease: Gamma heavy chain disease is characterized by the abnormal production of antibodies.[1] Antibodies are made up of light chains and heavy chains. In this disorder, the heavy chain of the gamma antibody (IgG) is overproduced by the body. Gamma heavy chain disease mainly affects older adults and is similar to aggressive malignant (cancerous) lymphoma.[2] However, some people with this disorder have no symptoms. People with symptoms may respond to chemotherapy drugs, corticosteroids, and radiation therapy.[3] Approximately one-third of individuals with gamma heavy chain disease are also diagnosed with an autoimmune disorder.[1] Last updated: 7/25/2010

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  • 25th Feb Third treatment of Tocilizumab

      11 March 2014

    Genefs health had been slowly declining so opted to have another transfusion. The hope was that after the last two doses, it may have switched off the immune response that may have been triggered by coeliac disease and allow him to be maintained without further treatment. Unfortunately his symptoms did come back about four weeks later and has been gradually escalating since. On the 25th Feb Gene had his third dose and reacted favourably to this treatment. The effects were immediate. This allowed him to attend a three day camp for work, without the transfusion he would not have been able to achieve this. The Haematologist has arranged for a histology review from his biopsy by an international expert to check that they agree with the diagnosis of Castlemans disease. The doctor is still trying to seek a long term funding solution for giving him Tocilizumab, this still remains under review.

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  • 24th Jan 2014 NZ Herald Article

      11 March 2014

    http://www.nzherald.co.nz/lifestyle/news/article.cfm?c_id=6&objectid=11191069 After this article went to press to our amazement the gGive a littleh donations went crazy. Once again we are deeply humbled by the amazing caring New Zealanders who have given so freely to our cause. The words of comfort and support have been touching and awe-inspiring. We just canft describe how we feel and are hugely indebted to you all. Thank you! He aha te mea nui ki tenei ao? Maku e ki atu. He tangata, he tangata, he tangata. What is the most important thing in the world? I would reply that it is people, people, people.

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  • 24th Jan 2014 NZ Herald Article

      11 March 2014

    http://www.nzherald.co.nz/lifestyle/news/article.cfm?c_id=6&objectid=11191069 After this article went to press to our amazement the gGive a littleh donations went crazy. Once again we are deeply humbled by the amazing caring New Zealanders who have given so freely to our cause. The words of comfort and support have been touching and awe-inspiring. We just canft describe how we feel and are hugely indebted to you all. Thank you! He aha te mea nui ki tenei ao? Maku e ki atu. He tangata, he tangata, he tangata. What is the most important thing in the world? I would reply that it is people, people, people.

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  • 24th Dec 2013 Second treatment of Tocilizumab

      11 March 2014

    Treatment no 2, Genefs transfusion didnft go so well this time. He went immediately to bed after the transfusion and was sick for three weeks solid. The Specialist thought Gene was brewing an infection which blocked a favourable response. This was very disheartening, especially as he was bedridden over the holiday period.

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  • 3rd Dec 2013 first treatment of Tocilizumab

      11 March 2014

    Gene was treated with Tocilizumab at a cost of $2,500. This is an infusion works by neutralizing or blocking the interleukin 6 gene otherwise known as IL-6, the immune protein suspected of playing a role in causing this disease. A week or so after this treatment he began reacting exceptionally well to the drug. Friends and whanau had noticed an immediate improvement to his general appearance.

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  • 25th Feb Third treatment of Tocilizumab

      11 March 2014

    Genefs health had been slowly declining so opted to have another transfusion. The hope was that after the last two doses, it may have switched off the immune response that may have been triggered by coeliac disease and allow him to be maintained without further treatment. Unfortunately his symptoms did come back about four weeks later and has been gradually escalating since. On the 25th Feb Gene had his third dose and reacted favourably to this treatment. The effects were immediate. This allowed him to attend a three day camp for work, without the transfusion he would not have been able to achieve this. The Haematologist has arranged for a histology review from his biopsy by an international expert to check that they agree with the diagnosis of Castlemans disease. The doctor is still trying to seek a long term funding solution for giving him Tocilizumab, this still remains under review.

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  • 24th Dec 2013 Second treatment of Tocilizumab

      11 March 2014

    Treatment no 2, Genefs transfusion didnft go so well this time. He went immediately to bed after the transfusion and was sick for three weeks solid. The Specialist thought Gene was brewing an infection which blocked a favourable response. This was very disheartening, especially as he was bedridden over the holiday period.

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  • Update for 19/12/2013

      19 December 2013

    Hi Everyone, Just a Big ""Thank You"" from Dee, Gene and the family for the HUGE support they received at the STO Golf Fundraising day which was held on Monday. What a brilliant day! Thanks to the Sponsors and for everyone who made the day a huge success!

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  • Further details about the cause

      4 December 2013

    A group of us got together to highlight the challenges facing Gene, Dee and family with a view to seeking assistance from others for this deserving family. Gene displayed flu-like symptoms intermittently for more than two years but from January 2012 these symptoms became constant. After a number of diagnosis, in June this year , Gene was taken into surgery for a suspected perforated ulcer however during surgery, golf ball sized lumps found on lymph nodes lead to a diagnosis of suspected Castlemanfs Disease a rare condition commonly found in Pasifika people and Maori. Following many tests it has been determined that Gene ealmost certainlyf has Multicentric Castlemans Disease which has resulted in high fevers, fatigue, weight loss, and at times severe pain. Unfortunately due to the rarity of this disease it is difficult to confirm its presence 100% and the Haematologists and Pathologists involved in Genefs case cannot agree on the results, hence the government drug agencies are unwilling to fund corrective treatments. The outcome is that Gene is not getting the help he desperately needs and the family is facing increasing stress and financial burden. Drug costs alone for treating Castlemanfs disease could run to $34000 per annum Though Gene has continued to work as much as he is able, the emotional stress on Gene, Dee and family along with the financial burden is really taking its toll. They have had to raise a mortgage against the family home in order to make ends meet and it has really come down to seeking assistance from others to ensure Gene gets the help he needs. To this end we are seeking assistance from the wider community to the value of $50,000 and would really welcome your help !!

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