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Harry’s Hydrocephalus Awareness Trust (Harry’s HAT)

Harry’s Hydrocephalus Awareness Trust (Harry’s HAT) is a user-led charity, founded by the parents and friends of Harry Coates, a 3-year-old hydro-hero who lives with Hydrocephalus.

The aim of the charity is to improve the outcome for all children with Hydrocephalus. Currently there are only two treatments for Hydrocephalus, both of which involve invasive and risky brain surgery. This surgery usually involves the insertion of a device called a shunt. Although life-saving, 50% of all shunts block within the first two years of insertion (resulting in a need for further brain surgery, called a shunt revision). The charity aims to change this – it’s ultimate goal is improve treatments and options for those with the condition.

It is not uncommon to hear of a child having had numerous shunt revisions before their tenth birthday. This makes daily life difficult, stressful and has a significant impact on the quality of life of both a child and their family.

The charity, which is run on an entirely voluntary basis, works to:

  1. Raise awareness of Hydrocephalus. Hydrocephalus is more common than Down Syndrome, however it receives little funding or support. It is estimated that 1 in every 1000 babies are born with it each year (congenital hydrocephalus), and many more will go on to develop it (acquired hydrocephalus). In the US Hydrocephalus is the most common reason for brain surgery in infants.
  2. Fund training, so that front-line workers and those in direct contact with babies and young children can learn more about the condition and consequently improve patient care.
  3. Sign-post vulnerable and isolated families, whose child has been diagnosed with the condition, to verified organisations for further in-depth support.

Following feedback and in consultation with some of the families, the charity has recently launched a Small Grants Programme. It can now award small grants of up to £500 to individual children affected by Hydrocephalus. This can help towards the purchase of equipment, or items needed to help the child, or to ‘top-up’ a personal appeal for a larger sum of funding. The main criteria is that the beneficiary must be a child who has been diagnosed with Hydrocephalus.

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