When four year old Sophie Rolf from the Isle of Wight developed a tremor in her left arm, her parents were immediately worried.
Although initially they went to their GP for advice, they were concerned enough to make a quick appointment with their emergency department at a local medical centre in May 2012. The doctor carried out a series of tests and concluded that Sophie needed to be referred to the paediatrics department. However, the two month wait for a referral appointment seemed too far away, so Sophie’s parents, Aaron and Gemma, took matters into their own hands and were seen almost immediately after phoning the department themselves.
10 week wait for MRI scan averted
Tests were conducted with results promised, and an MRI booked for ten weeks time. However, one morning little Sophie woke up and complained of seeing flashing stars and then later in the day, she said she could see two televisions. With some panic, Aaron and Gemma desperately tried to get an earlier scan and with much perseverance, and a wonderfully accommodating member of staff in the MRI department, Sophie was scanned that afternoon. This is when the real emergency started with the doctor explaining that Sophie had a brain tumour and needed to be transferred immediately to Southampton Hospital. The date was Monday the 11th June 2012.
On Tuesday Sophie had a stent put into her skull to drain the fluid that was causing the blurry vision and was kept in until the end of the week, was scanned again and then allowed to return home.
Two weeks later the news came that every parent dreads – Sophie had a Supratentorial High Grade Bilateral Thalmic Tumour – an inoperable brain tumour and the prognosis with treatment was one to two years. A proposed course of radiotherapy and chemotherapy for six weeks was agreed as well as enrolling Sophie on a clinical trial for a new treatment not yet licensed in the UK.
Helping Sophie find her way
This devastating news for the family was greeted not by despair but by a desire to help Sophie to find her way through the treatment and the next few months so they immediately set up a fund with brainstrust to raise money for the travelling and associated expenses that would be incurred helping their little girl through this awful time. brainstrust works nationally, helping patients from the point of diagnosis with help, support, practical advice and a listening ear to patients and carers. We were able to help the Rolf family to access the correct medical professionals and are now helping to administrate the fundraising campaign for the family. Also hugely supportive are family friends Paul and Jo Blackley whose daughter is friends with Sophie – they have been instrumental in getting a website up and running and managing much of the valiant efforts to raise money.
Fundraising for Sophie
Within two weeks of the fund going live, over £12,000 in donations has been received and the family is stunned by the response. Sophie is coping really well with her treatment, is a bright and positive little girl and never complains or moans. Her parents are immensely proud of her and the smile on her face.
The fund is called KissyPuppy which is a special kind of kiss and cuddle that Sophie likes to give her big brother Jack (although he’s not so keen being 8 and very grown-up!) Sophie will be five years old on the 23rd August and the family would love to spread the word about her story and raise awareness of the importance of early diagnosis, of being kept informed of all the options surrounding brain tumours and to encourage others to seek help as soon as they can.
Help Sophie battle her brain tumour
If you would like to set up your own fund, then give us a call on 01983 292405 or email email@example.com To see some of the funds that are currently raising money under our umbrella, please visit www.brainstrust.org.uk/little-ships.php