In June, Amanda & I will be taking on the Lake District Ultra Challenge in support of our amazing Goddaughter Freya. We are doing this to raise awareness and funds for the charity, Young Lives VS Cancer. This is a 50 km challenge including 1200m of ascent, starting on the west side of Lake Windermere and finishing in Kendal.

Freya’s Story…

In 2022 we noticed that Freya had become very lethargic, sleeping more than usual and awake during the night drinking up to 5 -6 pints after consuming a lot of liquids during the day. Her appetite dropped and she was underweight, with her energy levels depleted and her concentration levels decreased. Her periods stopped too. We brought this to the attention of our GP and after 9 month of appointments and numerous blood tests, we were told this was puberty and no action needed to be taken. 

In March 2023, after querying Barnsley Hospitals decision to not explore this further our GP referred her again and following more blood  tests in June 2023 a cancellation appointment was finally offered on 5th July. The consultant advised us that her symptoms were those of anorexia - upon being respectfully challenged and encouraged to examine the blood results in more detail, he acknowledged her cortisol and thyroid levels were low. 

On the back of this we were instructed to complete a diet, exercise, fluid and sleep diary for two weeks and a referral was finally made in August 2023 to Sheffield Children’s Hospital. On 15th September, we were advised it was suspected that Freya had a tumour in the stalk of her pituitary - MRI and lumbar puncture’s followed and on 29th September we received confirmation of the tumour. We were also told that Freya has adrenal insufficiency, thyroid, and diabetes insipidus as a result of the pressure the tumour has caused. 

Finally after months of waiting we were advised that Freya’s tumour was a germinoma - a very rare childhood cancerous tumour and that we needed to start chemotherapy at Sheffield Children’s Hospital for a 12 week cycle followed by proton radiotherapy for up to 6 weeks at Christie’s hospital in Manchester. The prognosis is 95% positive outcome which we remain optimistic about. 

Freya has been amazing and has dealt with each hurdle including shaving her amazing hair off and choosing her wig the same week as her prom dress. While our lives are disrupted, we still feel blessed at the way she has handled this inspiring us and others with her bravery & humour. Our journey has been supported by our family and friends who have provided distraction and positivity to keep us focused with our eyes on the prize. 

It should not have taken this long for Freya’s diagnosis and therefore we are taking on this challenge to raise as much money and awareness as possible to support this amazing charity.

Please support us by donating using the link above. We understand times are difficult for everyone at the moment, so if you cannot donate please help us in raising awareness by sharing this post.

Thank you, Gary