Mum Meghan Kiely opens up about how neck pain led to her diagnosis of 19 chronic illnesses

A young mother of two has opened up about how a neck pain led to 19 rare and chronic health diagnoses that left her bedridden for most of the day.

Meaghan Kiely, 38, from Bunbury Western AustraliaHe spent the last year in and out of hospital after regular visits to a physiotherapist to strengthen his neck muscles following a skiing injury in 2009.

The appointment, which took place in January last year, ended badly, with Megan suffering a bulging disc in her neck while doing the prescribed exercise.

Over the next six months she had severe migraines that forced her to quit her job as a behavioral therapist for children with autism.

His speech was soon affected, his brain was foggy and he lost consciousness if he tilted his head back.

DOctors discovered Megan had the genetic disorder Ehlers-Danlos syndrome (EDS) – which affects the skin, joints and blood vessels – and it had worsened during her visit to the physio.

Megan was then told her brain had herniated and she had developed a Chiari malformation – a condition where part of the brain pushes against the base of the skull.

Megan began suffering the first of a series of seizures in August last year and now has a team of eight specialists working around the clock to help her deal with her many health ailments.

In another shock, Megan was recently diagnosed with tumors on her brain and spine where the young mother will now have to be flown to Sydney for treatment.

‘Every day is different, my husband and I basically have to manage each day based on which symptoms are spreading and which symptoms are most present,’ she told Daily Mail Australia.

‘A good day for me is if I can get out of bed for an hour or two and even then I can take days to recover.’

After her first seizure in August last year, Megan spent a week in the ICU in a coma.

When he finally woke up, he was temporarily paralyzed on the right side of his body and had to learn how to walk again.

One of Megan’s many ailments is chronic inflammatory disease of her esophagus.

This means his stomach doesn’t empty properly and his throat ‘thinks it’s having an allergic reaction’ to anything he tries to eat or drink.

He now has a tube in his nose that helps him get the nutrients he can’t get through food.

‘It’s a struggle, it’s hard for me to see Meg in constant pain,’ said her husband Selwyn Titus, who lost his job after taking time off to care for his wife.

‘He is the bravest man I have ever met. I just feel helpless, because I’m a strong man and there’s nothing I can do to help him… If I could, I’d take the pain away.’

The family were living in regional Western Australia when they were advised by rural medical staff that they did not have the facilities to treat Megan, so the family packed up and moved to Melbourne.

Her health battle has been difficult for her two young sons, aged four and seven, who Meghan says have ‘taken on’ the severity of her challenges.

‘My condition means I can’t walk properly at times, Selwyn basically has to lift me up and support me and my four-year-old is constantly checking on me and asking if I need help walking today,’ she said.

‘I’m incredibly proud of how compassionate they are, but I’m so sad that they had to learn this lesson at such a young age and in the way they did.

‘It affects them mentally. They try to hold onto it to be really strong.’

Meaghan provides her regular updates Instagram Page, and opened up about the emotional pain of living with chronic pain in an emotional video.

‘I’m mourning the life I used to live because I realize I’m not going to get it back, it’s never going to come back,’ she said.

‘I suffer constantly, what kind of life is this? I’m taking the impact it’s having on my family, on my husband, on me, on my goals, on my future.’

In another post she detailed the difficulty of wanting to be there for her sons.

‘Every day I wake up I do my best to pull myself together, not for anyone else, but for me and my kids. I may look normal, but most days it takes everything I have to get ready.’

The mother said something that hit home when her son was asked in his kindergarten class to draw a picture of what his parents did during the day.

He pulled me to the bed. It breaks my heart,’ she said.

‘It is for my children that I fight to be strong, healthy and to find answers to why my body is failing me.’

Not only will Megan now need cervical spinal fusion surgery to stabilize her neck, she will also need brain surgery to relieve pressure on her skull.

‘My neck is constantly dislocated in half when I move it. Surgery to stabilize my spine, because the risk is that if I have a bad seizure I could paralyze myself,’ he said.

A recent diagnosis of tumors in his brain and spine will also require treatment.

The family still don’t know if the tumors are cancerous, but are flying to Sydney to see specialists.

As both the parents are out of work, A has built a family GoFundMe To help them cover the cost of Meaghan’s constant medical appointments.

Mom hopes she can help remove the stigma surrounding chronic illness.

‘Chronic illness is so difficult and isolating, and you often feel alone,’ she said.

‘You feel like you’re constantly fighting because you think people don’t believe in you, but I want people with chronic illness to know that what you’re going through is real and it looks different for everyone.

‘Don’t compare your experience to someone else’s and make it feel less valid.’

Despite the horrors of the past year and more difficulties on the horizon, Megan is determined to keep fighting.

No indication yet of what his recovery will be like but he is hopeful his upcoming surgery will relieve some of my pain.

‘When the hits keep coming… I’ll get back up,’ he said.