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Leslie Williams avatar
Leslie Williams

The Poppy & Evie Smile Campaign

We are raising funds for research for Histiocytosis UK because we need to find a cure and improve treatment.

86 %
£34,624
raised of £40,000 target
by 184 supporters
Donate

Histiocytosis UK

We fund research & information support to improve the lives of patients & families

Charity Registration No. 1158789

Story

Thanks for taking the time to visit ourJustGiving page.

Poppy & Evie's Story

Poppy and Evie are identical twin girls. They are four years old. From four months old they showed signs of being unwell. Although they were constantly vomiting and had blood in their nappies they were repeatedly diagnosed by a string of doctors as having an allergy to milk.  When they were 10-months old, Poppy & Evie became seriously ill with gastroenteritis and were admitted to Addenbrooke's Hospital in Cambridge.
Four weeks later, on Christmas Eve 2015, we were told by a consultant paediatric oncologist that Poppy & Evie were suffering from a very rare form of children's cancer - Langerhans Cell Histiocytosis (LCH).  LCH is the most common of the histiocytic disorders.  It is very uncommon and is believed to affect 1:200,000. It is a 'multi-system' disease that can simultaneously affect many body systems, such as skin, bone, lymph glands, liver, lung, spleen, brain, pituitary gland and bone marrow.  A doctor later told us that the disease had spread extensively, affecting their intestines and bowels, skin and ears. Perversely, it was only by the sheer 'good fortune' that an experienced dermatologist recognised a tell-tale symptom (a rash on their tummies and back) that the girls were diagnosed with LCH before the disease had affected their bone marrow, brain or glands. Nevertheless, they were in a very bad way.

Apart from very occasional, brief respites, the girls spent most of 2016 in hospital. They underwent three different series of chemotherapy treatment; each one stronger than the previous. The severity of the treatment is life threatening in itself and they were twice admitted to paediatric intensive care.  For most of that time they were confined in one room because the chemotherapy temporarily wipes out the immune system and they become neutropenic, making them susceptible to just about every infection and disease imaginable. The girls had nasal tubes and chest (Hickman Line) tubes inserted for all of that time so that milk and medicines such as the chemotherapy drugs could be administered around the clock. Throughout all of this, Poppy and Evie handled everything that was thrown at them with remarkable bravery and fortitude. Unless they were feeling very unwell indeed they were smiling and laughing. They inspired everyone around them including the doctors, nurses and medical support staff and the parents of other patients in the oncology ward.

In January 2017 we were told that Poppy & Evie were in remission. They then began a 6-month maintenance programme involving a relatively low dose of chemotherapy administered every month during a 4-day stay in hospital. The treatment was designed to eradicate any remnants of the disease that may still have been in their bodies.  There are no longer any symptoms or visible signs of the cancer. It has gone. However, LCH is a horrible disease and can be very stubborn. It has a tendency to re-occur so the girls will have regular check-up's and blood tests virtually until their late teens/early 20's.  Whatever happens, we know that as a family unit and the bravery and strength of Poppy and Evie, we will handle it.  They are truly remarkable little girls.

Looking at them now you would never believe what they have been through. They are absolutely flourishing, full of fun, energy and love. They are an absolute joy. They are now attending nursery school and they love every minute of it.

Research into LCH and hystiocytosis is not funded centrally by the government because it is so uncommon.  In fact the NHS does not record cases of the disease for statistical purposes. To be fair, it is just one of more than 4000 rare diseases that the NHS have to contend with. However, the lack of awareness within the medical profession as a whole means that a great many cases go undiagnosed or are diagnosed too late. This is where we, and hopefully you, come in because as a family, we are determined to help change that. We want to help other children and their families avoid going through the nightmare that we have experienced and continue to experience. We also want to find a way to say thank you for the fantastic medical care that Poppy and Evie receive from the NHS. There is only one registered charity that raises money for medical research into LCH.  The charity is Histio UK .  It is run by a wonderful lady, Lynn Jackson. 90% of the funds that they raise go directly into desperately needed medical research.

With your help we can make an enormous difference. To achieve our objectives, and to honour their bravery and inspiration, we established the Poppy & Evie Smile Campaign. Every penny we raise goes to the Histio UK charity. This Just Giving page is linked directly into The Poppy & Evie Smile Campaign fund page on the Histio UK website (www.Histiouk.org/the-poppy) Thank you in advance for any support that you can provide.
 




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