Help Amy fight MND

Hi there, we are Deanna, Sara and Jess, and we are best friends to our wonderful, vibrant and loving friend Amy. Amy is a devoted partner to Simon, daughter to Deb & John, and mother to her beautiful girls, Hannah (born Dec 2020) and Georgia (born May 2022). Earlier this year, Amy received some devastating and tragic news that turned her life upside down.

At 27 years old, Amy was diagnosed with Motor neuron disease (MND). MND is the progressive degeneration of the nerve cells that control our muscles.

Please take the time to read Amy’s journey below.

The Diagnosis

The symptoms began during Amy’s pregnancy with Georgia. Amy’s gait began to change. She was having frequent falls and experiencing severe cramps and leg spasms, making moving difficult. However, these were put down to typical pregnancy symptoms.

In May 2022, after giving birth to Georgia, Amy’s symptoms became progressively worse. Within 5 days after giving birth, Amy struggled to cut up food during meals, her walking became tiresome and challenging, and there was a noticeable decrease in her overall strength.

Again, Amy pushed through and put these symptoms down to the pregnancy and birth.

It was only when Amy was knocked over by her 1.5-year-old toddler, Hannah, that she knew something was wrong. She went to see her GP, who was deeply concerned and immediately sent Amy for urgent scans and tests.

Over the next few weeks, Amy was sent for two brain and spine MRIs, nerve conduction tests, a lumbar puncture, and more blood tests than most people have in their whole lives. When her newborn, Georgia was only five weeks old, Amy spent a week in the hospital being poked, prodded, and tested for every condition under the sun. Alarmingly, all the tests came back clear.

In July 2022, when Georgia was only 2.5 months old, 27-year-old Amy was diagnosed with MND.

MND is a rare disease that usually affects men between 50 and 70 and can only be diagnosed by eliminating all other possibilities.

Being so young, with a disease that affects everyone so differently, Amy is unsure what her future looks like. Amy, Simon, and their girls must learn a new normal each day.

Amy can no longer do simple everyday tasks such as showering and dressing. She cannot eat without difficulty. She can’t drive and needs a walker to get around the house and a wheelchair when in crowds and travelling long distances. Amy is unable even to pick up her kids anymore.

Nothing is the same as it was six months ago.

Treatment

There is no cure for MND.

Treating MND is about relieving symptoms, improving the quality of life, and, hopefully, slowing the progression of the disease. There is no treatment to reverse the damage already done to the neurons.

Currently, in Australia, only one medication approved by the TGA slows the progression of MND. As Amy is still breastfeeding Georgia, she is ineligible.

To receive the available treatment in the hope of slowing the progression of this horrible disease, Amy must begin this drug and continue taking it for at least six weeks before she can enter any clinical trials. This also means giving up breastfeeding her 5-month-old baby much earlier than planned.

Amy has shown some small positive responses to IVIG (Intravenous Immunoglobulin) treatment, which she will continue, hoping for some relief.

Many promising treatments in later phases of clinical trials have been found to slow the progression of MND. But to enter any clinical trials, Amy has to be on the TGA-approved drug for six weeks.

What Now?

Amy is taking everything day-by-day and hopes to continue spending as much time with Simon, the girls, and her parents as possible.

Every aspect of Amy’s life has now changed dramatically. Amy physically can’t take care of the girls and herself without help. Simon is currently working from home as much as possible to care for Amy whilst also looking after his two young daughters. Amy’s parents are also caring for Amy and their granddaughters while trying to juggle full-time work - and living over 2.5 hours away from Amy.

Having been diagnosed with this disease at such a shockingly young age, Amy is also determined to advocate for other young people suffering from MND to increase their access to crucial support, services and equipment.

Our Plea

All Amy wanted her whole life was to be a mum. Her diagnosis means this has tragically been ripped away from her, and she and her family must look towards a new, complex and very different way of life.

With no known cure, our greatest hope is that Amy, Simon, and her beautiful little girls can spend as much time together as possible. We hope this family can make lifelong memories in the time Amy has. We want the girls to know their mum as the strong, confident, and incredible woman we’ve known for 20 years. This means making sure Simon can care for her and trying anything possible to help slow the progression of this debilitating disease.

There will sadly come a day when Simon will need to stop working to care for Amy. When this happens, the family will require crucial financial support to be able to afford basic everyday necessities.

We also hope that in the future, Amy will be able to participate in clinical trials as research moves towards a potential cure for MND. Participation in these trials will cost a substantial amount of money - even more so if they are unavailable in Australia.

If you can, please find it in your heart to donate to Amy and her family to allow them as much time together as possible and give her the best chance to see her girls grow up.

Thank you for taking the time to read this message. Your help will make a world of difference and is so greatly appreciated!

Deanna, Sara and Jess