Life-Changing Surgery for Meg

Hi friends,

We are setting up this GoFundMe page for our wonderful friend Meg and her family.

Until 12 months ago Meg was a vibrant mother, partner and friend who dedicated her life to her family and helping others. She supported children with Autism as a behaviour therapist and helped struggling parents understand newborn sleep cycles and developmental expectations as a paediatric sleep advisor. She also has two young boys, Grayson (7) and Jameson (4), who is her entire world.

And then it all changed in January 2021. Meg bulged her C4 disc in her neck after seeing her physio for routine strengthening exercises. Over the next 6 months she experienced terrible headaches and migraines that ultimately changed her life forever, which also forced her to stop working and giving up the career she adored and severely affected her ability to engage with her children in the same way she once had.

The migraines, along with the pain, affected her speech- stuttering words, brain fog, fatigue, dizziness, and vertigo. It then progressed, so that when she tilted her head back her eyes would flutter, and she would start to lose consciousness.

After months of visiting the GP, she was finally ordered a CT that revealed her brain had herniated 9mm (about 0.35 in) into her spinal canal- also known as an acquired Chiari Malformation Type 1. As they lived in a rural town in WA, the wait list for a neurologist was many months long. In August 2021 Meg suffered her first of many seizures, however this was one of the worst. Unfortunately, she didn’t initially wake from it and spent over a week in ICU before waking and being moved to the medical ward.

This was the beginning of her, or should I say their family’s long journey down the path of chronic illness and flighting for a better and healthier future for Meg.

When Meg finally left hospital, she had significantly reduced strength and temporary paralysis on the right side of her body- it was extremely weak, and she had loss of sensation and function. She had to re-learn to walk again with a walker.

Sadly while all this was happening Meg’s husband lost his job due to taking so much time off work to care for Meg and their children. So, with a list of specialists they needed to see and advised by the rural doctors that they didn’t have the specialists to treat her, and she needed to be in a larger city for treatment, they made the painstaking choice to take the kids out of school and re-locate to Melbourne where Meg could receive the best care.

Since arriving in Melbourne in December 2021, Meg’s husband has taken on the role of full-time carer for Meg and the children.

Meg now has a heartbreaking number of diagnosed rare and chronic conditions - 19 in total, with a team of 8 different specialists. This number continues to grow as her condition deteriorates- it’s like a domino effect. She has spent the better part of the year in hospital, for weeks to months at a time.

While Meg and her family have been living off savings this past year and the kindness of family, Meg has recently received more devastating news.

She has just learned that she requires cervical spinal fusion surgery to stabilize her neck as it sublaxes every time tilts it forward and causes a seizure each time she tilts it backwards. THEN brain surgery to decompress the pressure caused by the brain herniation in her skull. However, more devastating than this is, she has just learned she now has a pituitary brain tumor and a tumor in her spine- T1 vertebrae which will also need treatment.

To add insult to injury, the only doctor who can perform her spinal surgery is in Sydney. So, they need to re-locate to Sydney for an undetermined amount of time to have this surgery.

It was at this point; we knew this family needed help from our community. They have been fighting this battle all on their own for so long and are stressed beyond words about money and how they will continue to support themselves and their children. They can not financially continue without our help.

To look at them you wouldn’t know the depth of their struggles. Meg continues to smile, continues to try her best to spend time with her children (particularly on the weekend) knowing it will take the entire week to recover, and not once has she lost hope or a positive attitude. She whole heartedly believes in finding the positive aspect to each situation. For her the silver lining in all this is learning about these chronic conditions and trying to bring light and awareness to them through her Instagram page where she has tried to track her journey @life_is_the_real_beauty

If you can help this family in anyway, whether it be $1 , $5 or anything you can afford, that will go a long way for this family and be a very welcomed blessing.

Diagnosed Conditions:

Narcolepsy

Pituitary tumor

Degenerative Disc Disease C1-6

Non-epileptic seizures (dx nerve damage)

Ehlers-Danlos Syndrome

Gastroparesis

Chiari Malformation Type 1 - 9mm (about 0.35 in)

Eagles Syndrome

Occipital neuralgia

Chronic Migraines

Eosinophilic esophagitis (EoE)

Mast Cell Activation Syndrome (MCAS)

Dysautonomia

POTs

Dehiscence semicircular canal right ear

Wide Spread Pain Syndrome

Fibromyalgia

Endometriosis

Ovarian Cysts

We and Meg’s family thank you for any and all donations. And if you can’t donate, please keep this family in your thoughts and prayers. Much love and appreciation to you all.