Please support Lachlan Webb & family in battle with FFI

A message from Claire & Hayley:

We have been truly overwhelmed by everyone’s love and support during this time.

Despite what Lach is going through, he is still determined to spend what little energy he has left to raise awareness and funds for research, and ensure no other FFI carrier has to suffer the same fate he is enduring.

It’s a true testament to the resilient, incredible man he is - one that us girls continue to be awed and inspired by on a daily basis.

We just want to extend our heartfelt thanks to everyone who has donated and continues to share the fundraiser page. Your support is appreciated more than you know.

TO DONATE: https://gofund.me/75d62596

I have set up a GoFundMe page for my darling brother and lifelong best-friend Lachlan Webb, his beautiful wife Claire and their baby boy Morrison, who are going through the absolute unthinkable.

In April, Lach was diagnosed as having ‘triggered’ for Fatal Familial Insomnia (FFI); an extremely rare, incurable, neurodegenerative prion disease we both share.

Once the disease triggers, the body starts mass-producing mutated proteins which attack the sleep cortex of the brain, making REM sleep a physical impossibility.

Without proper sleep the body can’t regenerate resulting in insomnia, loss of motor skills, memory loss, dementia and ultimately - death.

For context; here is a news-segment “60 Minutes” did on Lach, myself and our condition in 2016:
https://www.youtube.com/watch?v=4Zaz67IcLDY

And here is an episode that CNN did on FFI and our journey in 2017:
https://www.youtube.com/watch?v=BKs7nqBP6EM

So far the genetic disease has claimed the lives of our beautiful Mum Narelle, two Uncles, one Aunty and Grandmother.

While we’ve always known there was a risk of the disease ‘triggering’ at some point, never in a million nightmares did we think it would strike so early.

Lach is approaching his 36th birthday, his son Morrison is only 18-months-old, and he and Claire were forced to rush through their wedding in June…what should be the happiest time of their lives has fast become the most horrendously heartbreaking.

Lach has been experiencing aggressive symptoms for the past six months, which have progressively been getting worse. He is now wheelchair-bound, experiencing loss of eyesight, physical co-ordination, confusion, memory loss and is losing his ability to speak.

While we can’t be sure of time-frames, based on the disease’s rapid progression in our other family members; Lach has weeks, maybe months, at best.

Tragically, there is no known cure for Lach’s prognosis.

Currently; Lach’s wife, our Dad, Step Mum and myself share Lach’s full-time care between us, however, I am currently 7-months pregnant and as Lach’s condition deteriorates - we simply need more help.

Claire and our family will be unable to work as we continue to care for Lach and their beautiful boy Morrison through this next chapter.

To make matters worse, Lach doesn’t have life insurance.

Those who know Lach and Claire know they would never dream of asking for help…which is why I am.

Please help our family navigate this incredibly challenging time and support Lach, Claire and Morrison in what has been, and will continue to be, the hardest times of their lives.

Any funds raised here will go towards:

SHORT TERM GOALS:
- Providing Lach the best health-care we can; medical equipment, private nursing staff to assist with overnight care, medication costs, specialist Doctor appointments, alternative therapies, counselling and end of life care.
- Helping to support his family financially during this period of loss of income.
- Helping to create memories for Morrison, Lach and Claire together as a family.

LONG TERM GOALS:
- Supporting Claire in navigating life with Morrison; assisting her with the mortgage and living expenses, as well as parenting costs, school fees etc.
- Help raise awareness and fundraise for FFI research and other prion diseases

While there’s no amount of money that will ever ease this nightmare, by helping to alleviate some of the financial pressures it will mean we can focus on what’s important right now, which is spending quality-time together as a family.

Any contribution for my much beloved brother and his family - as well as sharing this fundraiser with your networks - is so appreciated.