Hope for Hypothalamic Hamartomas

I am taking part in the 5km Marathon Swim at the London Aquatics Centre on Saturday 12 November all in aid for Hope for HH UK.

After a number of life-saving operations, my granddaughters care was transferred to Great Ormond Street Hospital, where she was treated for complexed seizures, due to a tumour putting pressure on the hypothalamus and pituitary gland.

At the tender age of 3 years of age, my brave, beautiful granddaughter had an operation, which removed 80% of the lesion, resulting in a dramatic reduction in the number and intensity of her seizures.

The operation involved a new, ground-breaking procedure, which was considerably less invasive than conventional procedures, especially where the tumour sat, in the centre of her brain.
This operation was funded by both Great Ormond Street and the ‘Help For HH’ Charity.

This lesser known Charity helps to finance awareness among medical professionals,(condition is often mis-diagnosed), help/support for affected families and research for a cure.

Without this Charity none of this would happen so I wanted to try and help by raising awareness and funds by taking on this challenge of a 5k swim. I would like to see all children, in similar situations, have the same opportunity for this less invasive procedure as my granddaughter, and help work towards a cure

For more details on the swimming challenge & the charity, please see the links below

https://www.marathonswims.com/
https://www.hopeforhh.org/

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