Maidenhead mum shares son's story at Parliament event to raise awareness of life-threatening condition

A mum whose four-year-old son lives with a life-threatening condition has told his story at an event in Parliament in a bid to raise awareness and help others.

Danielle Faulkner’s son James Faulkner-Clarke has a complex form of hydrocephalus and has endured nine brain procedures/surgeries due to complications, with another small invasive operation due in July.

He was born 12 weeks early weighing just 1.4lbs, and due to this, suffered a bleed on both the left and right side of his brain.

Hydrocephalus causes fluid to build up in the brain and this excess fluid can then put pressure on the brain and damage it.

An estimated one in 770 babies will develop the condition each year, which currently has no cure and if left untreated could cause brain damage or be fatal.

Detecting the condition early can help to improve the outcome as the child can access specialist medical care
more rapidly.

On Wednesday, June 15 Danielle was among a host of speakers at a Parliamentary reception hosted by Michael Gove MP, for charity Harry’s Hydrocephalus Awareness Trust (Harry’s HAT).

The reception at the House of Commons was attended by more than 130 people, including Mr Gove’s fellow MPs Dominic Raab, Mark Tami, Maggie Throup and Ranil Jayawardena.

The charity was invited to raise awareness of their work and stress the importance of the measurement of a baby’s head circumference, as this can be a key indicator of hydrocephalus and can aid medical professionals in undertaking early intervention.

At the event, Danielle spoke of James’ complex journey with hydrocephalus and explained the challenges in caring for a child with the condition, as well as the importance of increased head growth as a sign, and the significance of strong bonds between families and medical professionals.

Danielle said: “I want to help others be encouraged to speak up when they feel concerned about their child. To give more knowledge about this condition and to raise awareness of how important it is to have a strong trusting relationship with your medical teams.”

She added: “I felt very grateful and overwhelmed to be able to attend the House of Commons and present my speech to the MPs and families that [are] in a similar situation that we are in.

“To share our life experience and complex care for James is emotional for us as parents, but for others to see us go through the worst time of our life and still pull through and be so positive about sharing our experience.

“This was a beautiful opportunity to tell my son’s story to those who could really make a difference to those affected by hydrocephalus.”

Discussing the reception Caroline Coates, founder of Harry’s HAT, said: “It was an inspirational day which has raised awareness of a relatively common, yet often misunderstood, condition which affects so many children including my own son Harry.

“The event has also helped us to highlight why head measurement in babies is so critical in helping those born with

hydrocephalus to have the best chance in life.”

Mr Gove said: “I was absolutely delighted and honoured to host the parliamentary reception for Harry’s HAT at the House of Commons earlier this week.

“Harry’s HAT is a hugely important charity, which is providing vital support for children and their families who are affected by Hydrocephalus. It was so wonderful to see Caroline Coates again, the Founder of Harry’s HAT, and to meet some of the other brilliant people working to raise awareness of this condition and the importance of head circumference measurement in infants.

“I was also very pleased to see so many people there showing their support for these brave children and their parents, and it was great to see a number of other MPs attend too, as well as ministers from the Department of Health & Social Care.”

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