The Louey Parkhurst Fund

Dedicated to the legacy of our beautiful boy Louey, in helping raise funds for research and awareness into paediatric brain tumours Louey was just 14 years when he died, unexpectedly and suddenly in July 2021.

Louey had a Pilocytic Astrocytoma tumour that we, and the GPs and doctors Louey had been seeing the last few months, had no idea was there.

Louey’s Symptoms

In the February of 2021, Louey had just started antibiotics for breakouts on his skin when a week later he had a random episode of vomiting. It come out of the blue and right after he was sick, he felt fine. After this happened again, we spoke to his GPs. He had also fainted at school and seemed to have lost his appetite. The initial thoughts from the GP surgery after a blood test was it was not serious and was that it was probably a reaction to the antibiotics. We stopped those ones and had a
break until the Easter.

The next couple of months things seemed to have settled. At the end of the May though the random vomiting episodes started again and we spoke with his GPs on numerous occasions over the following weeks. Louey had lost his appetite, was losing weight and had these random vomiting episodes with nausea. They would come on suddenly at different times of the day and again he would feel better when had been sick. He had another blood and stool sample; he was started on some omeprazole for his stomach which we were told would take some time to work and we were reassured it was nothing serious every time. The doctors had mentioned anxiety but it just didn’t seem to fit with Louey, he was a chilled-out teenager and it seemed his only concern was this random vomiting.

We continued with the medicine for his stomach, giving it time to work as they suggested and kept contact with the GP, speaking to them on many occasions. Louey was at school and swim training. At the end of June though he has a headache after his swim lifesaving class, something that hadn’t really bothered him before or he hadn’t complained about. His head was hurting and he was feeling weak and poorly, he was sick and felt faint and we were worried.

Discharged from hospital with a misdiagnosis.

We spoke to his GP and took him to the local A&E and Louey was admitted to our local children’s ward. During the next three days we were in hospital we spoke to the different hospital doctors on numerous occasions about his recent history and the current symptoms. Blood tests were repeated, he was given pain relief and fluids and we were reassured it was nothing serious.

We were discharged with a diagnosis of migraines and to follow up with GP on the vomiting symptoms if needed and to carry on with the omeprazole. Louey didn’t feel great, he still had a mild headache and sore neck but the doctors said this was to be after being in bed for the last few days and he just needed to mobilise. We trusted what we were being told by the medical professionals. Migraines kind of explained the vomiting episodes as well but it didn’t feel joined up and it felt as it was being treated as separate issues so after discharge we spoke to his GP and asked to be referred to paediatrics and an urgent one was given at this point.

After the rest of the week recuperating at home, Louey went back to school and we felt reassured everything was in hand and waited for his appointment to come through to get to the bottom of it all.

This didn’t come in time as 2 weeks later Louey had a what we thought was another migraine. He collapsed at home and whilst on the phone to 999 had a cardiac arrest and was taken by ambulance to hospital where it was discovered too late that he had a brain tumour in his posterior fossa. He had an unsurvivable brain haemorrhage caused by the pressure of growing tumour.

We lost our beautiful boy on the 12th July 2021 at 14 years old.

The next nearly two years has been full of expert, coroner and hospital reports into what happened and why. It’s too painful to go into all the details but Louey was failed by the doctors in many ways, on many opportunities which the hospital trust admitted. The type of tumour Louey had was a benign pilocytic astrocytoma.

Pilocytic Astrocytoma

We want to raise awareness of all the symptoms for not only parents but also medical professionals and to raise funds for the much-needed vital research into these childhood tumours.

Although no tumour is good and this type can spontaneously haemorrhage, if the appropriate investigations had been carried out and the tumour discovered on his first admission to hospital then his outcome would have been so different and he would most likely still be with us today enjoying the life he loved and the future he deserved.

I can barely write down that we now know the main symptoms of a brain tumour in children and teens are random vomiting, weight loss and headaches. All of these red flags that we didn’t know and that were not joined together by the very people who you put your trust in to know.
Due to the coroner investigation, many changes and education have taken place at the local hospital trust and the GP surgery which is too late for our Louey but we hope will help others going in with the similar symptoms.

The shock and pain of this will never go, our hearts are forever broken. We have spent every day of his life with him, our bond was so close, we have watched with pride the young man he had become.

A bit about Louey

Louey was our beautiful boy inside and out. He was always really mature, people always thought he was older in personality and looks as he has always been quite tall. He had the driest sense of humour. He would take everything in and come out with the funniest one liner. He was kind, caring and affectionate, which we are so proud of.

Louey liked spending time with his friends at school and swimming but also very much enjoyed spending time with his family as he was so homely. He is so loved and he loved so much too. He enjoyed caring for and playing with his dog Marley. He loved helping out around the house and being involved in all aspects of family life. You would find him either playing car games like Forza on his X box or watching his favourite old programmes or films like Only fools and horses and Benidorm in our hot tub. You would hear him laughing even though he had seen them over and over again. He loved helping at home or his nans and was always willing to do so.

Louey and cars

The other life love of Louey’s was cars. At school he was part of the Greenpower team which built and raced an electric car at all the racetracks such as Ford Dunton. He told us that car companies such as Ford would be interested in taking on apprentices from this and it was something that interested him, a job working with cars. Louey never really asked for things for his birthdays so we used to get him driving experiences such as the young driver lessons, off road Range Rover experiences and driving a G wagon at Mercedes world. He loved having the chances to actually drive a real car. Louey loved going to car shows and would take lots of pictures of the cars and tell us all about each one. He watched Top gear and then the Grand tour on the telly. He also enjoyed making Lego cars too, recent ones were a Defender, a Porsche and a VW camper.

Louey was in year 9 at school and had settled in well even with all the Covid disruption there was in the previous year, he took it all in his stride. He had just taken his options for his GCSES that were due to start in year 10 and had got into all the first-choice subjects he had picked. He was looking forward to doing the ones he enjoyed the most especially Tech. Academically he was doing well but most importantly he enjoyed it and was happy spending time there with his friends and teachers.

Louey’s passion swimming

The main passion of Louey’s though was the water, he loved swimming and took every opportunity to be in the water, be it swimming, or snorkeling and jet skiing on holiday.
He started lessons at 3 years old and these continued throughout the primary school years at our local swimming pool. Once Louey has passed all his swim stages which was just before his 9th birthday, he was keen to continue so joined the local swim club, Witham Dolphins. He absolutely found his thing he loved and would train a few times a week. He started competing in galas with the squad as a team, first mini league and then the Essex swim league and also many individual galas.
Our weekends would usually involve a gala of some kind around the county. Louey’s stroke was freestyle and he worked hard to improve his technique and speed. He loved competing with his team in relays and as an individual. Even if he was only swimming in a couple of races in an event he liked to stay and support the rest of the squad. He enjoyed raising money and taking part in the sponsored swimathon every year as well.

One of Louey’s happiest and proudest moments was achieving his Essex County swim time in February 2020 at the London Olympic Park pool. His fastest time in his favourite stroke was 50 metres freestyle in 29 seconds and he worked so hard to get that. He wasn’t the fastest or the best but he was the happiest in the pool and enjoyed pushing himself to improve every time. Even though Louey was training 4 times a week with the Dolphins on a Saturday he used to take a lifesaving class at the pool. He started with Rookie lifeguard at about 9 years old and when he completed all those levels aged about 11 years old he moved on to the Survive and Save course which he never got to finish. Louey had plans that he would keep this class up until he was 16 years old and then he would be old enough to take the actual lifeguarding course and get a part time job at the local pool which he was at nearly every day anyway and is across the road from our house. He wanted to do this job while in year 11 and then have enough money saved to buy a car the following year for his 17th birthday. He would have as well as whatever he put his mind too, he worked hard to get there.

One of Louey’s happiest and proudest moments was achieving his Essex County swim time in February 2020 at the London Olympic Park pool. His fastest time in his favourite stroke was 50 metres freestyle in 29 seconds and he worked so hard to get that.

Our Loss

Losing Louey so unexpectedly and suddenly has broken the hearts of all his family and friends. His school friends, teachers, his swim club, our neighbours, the local community. The shock and pain of this will never go, our hearts are forever broken. We have spent every day of his life with him, our bond was so close, we have watched with pride the young man he had become. Louey had his whole life ahead of him. He should have been thinking about taking his GCSE exams last summer, his Prom, saving for a car that he has wanted to do for so long, planning life after school. He should be here to watch his nieces grow up. Everyone thinks the best of their children but our Louey really was perfect to us. Now all our lives and futures have changed, there wasn’t any part Louey didn’t touch when he was here and in losing him nothing is the same.