About

In 2015, not long after my sons 1st birthday. We were given the life changing news that our precious little boy has a brain tumour. It is a benign tumour called a Hypothalamic Hamartoma. Our world seemed to come to a stand still. Not knowing what this meant for his future. There were talks of neuro and gamma knife surgery, among other treatments. Thankfully, we found this charity Hope for Hypothalamic Hamartoma. This charity has provided us with so much. Giving us foremost, understanding of his condition and putting us in contact with other parents that had children with this extremely rare condition. This condition causes Freddie to suffer with precocious puberty he also has social and emotional difficulties. His treatment is intramuscular injections every 3 weeks to keep puberty at bay and stop the growth spurts. This will probably be for the next 10 years. Regular MRI scans to monitor the growth of the tumour. His bones are already the age of a 10 year old. At the time of diagnosis, his testosterone levels were higher than a boy in the prime of puberty and for a 1 year old was very hard to deal with. Freddie also has occasional hypothalamic rage but now his puberty is nicely controlled thanks to his brilliant Endocrinologist. And on that note.... Along with a few family members and a family friend we are going to run a half marathon. The Perkins Great Eastern Run in October. This is to raise awareness and much needed funds for this brilliant charity, that aim to constantly improve diagnosis and treatment for this condition. We would all be very grateful if you could sponsor us!!!! Please let's give children, like our Freddie, the best chance possible in life....Thank you.