In August 2014, Isobel was diagnosed with Langerhans Cell Histiocytosis (LCH). Unfortunately after trying two different types of chemotherapy, Isobel did not respond. On 5th 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. Since her passing, Isobel's parents have been raising funds for research into the causes, diagnosis and treatment of histiocytosis. Here is their story...
Born on 30th November 2012, Isobel was 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 huftys as she knew them, 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 6th 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 Nasal Gastric tube as she was unable to tolerate normal food and later on ended up having a Central Line, PIC 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 5th 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. It aims to raise awareness and vital funds to support research into diagnosing and treating Langerhans Cell Histiocytosis and for CCLG to support other children and their families whose lives have been affected by cancer.
Together, with the support of friends and family, they have undertaken a number of different charity events between them such as cake sales, theme days, bike rides, high teas, wear a funny hat day, barn dances, 10k runs, triathlons and skydiving. Suzanne and Michael Parmenter were awarded a Highly Commended Pride of Essex Community Champions Award in November 2015 for all their fundraising efforts in memory of Isobel.
In September 2017, Michael and his nephew Jake successfully summited Mount Kilimanjaro in Tanzania raising just under £5,000 and in April 2018, Michael also successfully completed the prestigious London Marathon in 6 Hours 30 minutes, raising just over £1,579.
To date, Suzanne and Michael have helped to raise over £40,000 in memory of Isobel and to find a cure for LCH.
In May 2018, Michael and Suzanne were runners up at the Essex County Council Who Will Care? Awards 2018 for the Business Award in recognition for making an impact on their local community through volunteering and charity work and were finalists at the National Family Business Awards 2018 for the Big Heart award, again, for their charity work in memory of Isobel.
Make a donation to The Isobel Parmenter Memorial Fund
Open an online fundraising page for The Isobel Parmenter Memorial Fund
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Text CCLG 5 ISOBEL to 70300 to donate £5.
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You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for The Isobel Parmenter Memorial Fund so that your donation is allocated to the correct fund.