help support Huxley on his TSC journey

Meet Huxley Foord. He was born on September 7th 2021. His parents are Maddi and Tanner Foord, and he has two older brothers, Billy and Leo.

He was diagnosed with a rare multi-system genetic disease called TUBEROUS SCLEROSIS. He has suffered up to 100 seizures a day since birth and has tubers on his heart, brain, and cortical dysplasia (undeveloped parts of the brain). These tubers will continue to grow on his organs throughout his whole life. See below taken from Health Direct (Aus).

What is tuberous sclerosis?

Tuberous sclerosis is an uncommon genetic disorder that involves the overgrowth of normal tissue in many different parts of the body, including the brain, heart, skin, eyes and the kidneys. Over time, the growths become hard and calcified.

Growths that start in the brain before birth can cause delayed development and intellectual disability and affect behaviour.

What are the symptoms of tuberous sclerosis?

Some people are severely affected by tuberous sclerosis, while others don’t realise they have it.

Symptoms may include:

*skin abnormalities, such as red or pink spots on the face, or discolourations of the skin or nails elsewhere

*benign growths on the brain, kidneys, heart, lungs, gut or eyes — these tumours are not cancerous but can cause problems by becoming large and blocking normal body functions

seizures

*intellectual disability (although half of people with the condition have a normal IQ)

*autism spectrum disorder

issues with learning, behaviour, thinking or mental health

These signs and symptoms usually show up when a child is aged between 2 and 6, but they can also appear earlier or later. Some people are diagnosed when they are adults.

Huxley has been diagnosed as being on the extreme end of the TSC scale. He has had almost half of his first year of life spent in hospital locally and in Canberra and Sydney. He has been on many different medications since the day he was born. The PBA did not cover many of these drugs, costing the family hundreds of dollars.

At 3 months of age, a special ketogenic formula was trialled to help with the seizures. This was a partially successful, reducing the seizures from around 100 a day to 10-20 a day.

Just before Huxley's first birthday, he was flown to Sydney Children's Hospital for a scheduled 9-hour brain surgery to remove a large tuber from his brain. The surgery successfully retrieved the tubers; Huxley has hemiparesis (weakness of one entire side of the body) on the right side and on the left side mild facial drop from the surgery. Huxley still has a very long road ahead of him. Huxley is expected to be in the hospital at least a few weeks after his surgery, with many more hospital trips to come.

Maddi has had to do a lot of hospital stays alone because tanner has had to keep at work so he can support his family and raise billy and Leo alone during these times.

The reason for this fundraiser is to take a bit of financial stress off Huxley's parents, Maddi and Tanner. Maddi can no longer work as she is now Huxley’s full-time carer.