The Isobel Parmenter Memorial Fund at CCLG is raising funds for research into the causes, diagnosis and treatment of histiocytosis, a rare cancer like group of diseases caused by an increase of the histiocytes (white blood cells) in the blood and tissue and in particular Langerhans Cell Histiocytosis (LCH). It is hoped that one day a cure can be found for this group of diseases.
Born on 30 November 2012, Isobel had been a bright, thriving, happy and healthy little girl. Isobel loved nothing more than having cuddles with her mummy and daddy, watching Peppa Pig and Mr Tumbles and snuggling up with her favourite “blanky”. She loved drawing and colouring, painting and putting her stickers on anything and everything she could. She loved animals, her favourite being elephants or “hufty’s” as she knew them as and treasured her favourite book, a big purple book filled with lots of pictures. She had a wicked sense of humour and an infectious laugh, lighting the room up wherever she was and whoever she was with.
Shortly after her first birthday in 2013, Isobel became sick. She started to go off her favourite foods, was frequently vomiting and passing foul smelling stools. She had many trips to her GP and to her local A and E and was finally admitted to hospital on 6 March 2014 before being transferred to a more specialist hospital two weeks later. She spent the next five and half months undergoing endoscopies and colonoscopies with biopsies, x-rays, ultra sound scans, MRI scans and regular blood tests. Isobel had a nasogastric tube as she was unable to tolerate “normal” food and later on ended up having a central line, picc lines and a jejunostomy, all to help keep her well. She also endured many blood and platelet transfusions
In August 2014, 9 months after she initially became unwell, Isobel was diagnosed with Langerhans Cell Histiocytosis (LCH). It is estimated 1 in 200,000 children become ill with LCH each year but it can affect adults too. Doctors and scientists do not know what causes LCH as it is not hereditary and it is not infectious and is currently treated with chemotherapy, radiation, steroids and in some cases, a bone marrow transplant. Isobel then underwent “marker tests” which included bone, skin and bone marrow biopsies. It was then, that the treating team discovered this disease was not only prevalent in her gastric tract but in her ears, skin, bone marrow, liver and spleen as well. In mid-August 2014, Isobel began the first stage of her treatment with Chemotherapy.
Unfortunately after trying two different types of chemotherapy, Isobel did not respond and she underwent “salvage chemotherapy”, a combination of two extremely potent chemotherapy drugs. Unfortunately, Isobel contracted an infection and she was transferred to the Paediatric Intensive Care Unit. On 5 October 2014, a week after arriving on PICU, Isobel had to be placed on a ventilator and later that day, her parents made the worst decision any parent has to make. They agreed to take Isobel off the ventilator. She passed away in her mummy’s arms holding her daddy’s hand aged only 22 months old after putting up such a lengthy brave and courageous fight for life.
LCH is a chronic disease. Most patients with LCH will survive but some may develop long-term side effects such as diabetes insipidus, stunted growth, bone defects, hearing loss, or neurological problems. In a minority of cases, the disease can be life-threatening. The diagnosis is currently made by a specific tissue biopsy and prognosis depends on the extent of the disease and the types of organs affected. It is believed to be under-diagnosed as some patients may have no symptoms at all while others may have symptoms which are mistaken for other conditions. Having raised thousands of pounds already for several cancer related charities, The Isobel Parmenter Memorial Fund was set up by Isobel’s parents, Michael and Suzanne in December 2015, to raise awareness and vital funds to support research into diagnosing and treating Langerhans Cell Histiocytosis and for the CCLG, to support other children and their families whose lives have been affected by cancer. They have undertaken a number of different charity events with many more planned for the future and have raised over £30,000 to date. The Parmenter family were awarded a Highly Commended Pride of Essex Community Champions Award in November 2015 for all their fundraising efforts in memory of Isobel which they are highly proud of.
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