FUND-raising for a 10-year-old Sampford Moor girl fighting a life-threatening cancer tumour has moved into a new phase as her parents start to adapt their home and lifestyle to accommodate her after specialist hospital treatment.
Harper Pumfrey received pioneering care in Spain and Germany after being diagnosed last summer with childhood diffuse intrinsic pontine glioma (DIPG), an inoperable and aggressive tumour which attacks the brain stem.
Life expectancy is usually measured in a matter of months but Harper responded well to the treatment, which was not available in the UK.
An online appeal launched by Harper’s aunty Fern Sibley with Alex Stanbury has so far raised more than £42,000 toward a £55,000 target to help parents Heidi and Lee Pumfrey cover medical costs and equipment.
Now, the couple are putting the appeal money toward home enhancements such as adapting a downstairs room as a wet room and providing a more comfortable downstairs bedroom for Harper.
Ms Sibley said Somerset Council had been helping with some of the cost of the building work but, ‘there will be money needing to be spent to make this a homely new space for her and the family to feel comfortable in’.
She said the New Year had brought with it new challenges for Harper and her family.
Ms Sibley said: “Words will never be enough to describe the heartache that it is to watch our beautiful, artistic, and fun loving girl battle through this awful condition.
“It has taken so much from her.
“It now feels at a point where every day she is here is a blessing, and so Lee and Heidi are doing everything they possibly can to make every day count.
“We are so humbled by the kindness that everybody has shown in their donations, but things are still feeling hard financially.
“Of course, a very large portion of the funding went in the initial travel in the search for treatments, the GoFundMe amount has now all been spent, and the costs are ongoing.
“Any little helps and is appreciated.”
Ms Sibley said the family also wanted to buy Harper a new adapted car seat for her to be able to safely travel to appointments and also enjoy some family day trips when she was able to do so.
She said: “We want to spoil her at every given opportunity with all the things she loves - new pjs, comforting gifts, soft toys, literally anything that we can think of which brings her a little moment of joy or relaxation.”
Ms Sibley said Harper ‘absolutely adores’ a Squishmallow - a brand of anthropomorphic stuffed toy.
It was also important to provide treats for Harper’s siblings, who ‘were going through a lot, too’.
Holistic therapy was another large ongoing cost for Mr and Mrs Pumfrey because it was one-to-one and Harper was seeing one of the top practitioners in their field.
A vital element of keeping Harper’s immune system and body balanced, which affected how she felt and gave her the best chance, was providing ‘the very best diet’, full of top ingredients, nutrients, and vitamins.
“Everybody knows how much an all-organic diet can cost,” said Ms Sibley.
“Finally, and this is a big one, relieving two of the most dedicated and loving parents of one burden in this terrible time.
“Helping towards mortgage, bills, or expenses, which allows them to focus more freely on making the most of every day with their daughter.”
DIPG attacks a part of the brain stem which controls vital functions such as breathing, blood pressure, and heart rate.
Medical support for Harper while she was in Spain costing £5,000 a week, but after a month in the centre, where she turned 10 years old, her family saw ‘definite improvements’ in her energy levels and gross motor skills.
Harper then visited a clinic in Germany for further care before returning to her home village.
As well as dozens of individual donations, the fund-raising appeal has been supported by Sampford Arundel Primary School, Swallows and Stawley Pre-School, and a number of skittles teams.
At the time of publication it had brought in a total of £42,118.
Anybody who wants to support Harper’s appeal can find her GoFundMe page here.