Fragile teen wishes to study medicine, spread awareness of Ehlers-Danlos Syndrome

15-year-old Mya Lilly has multiple dislocations each day caused by Ehlers-Danlos syndrome. When asked if anything on her wish-list was unrelated to medicine or her health, she found it hard to think of one. She wishes for a wheelchair-friendly car and home. She is thankful to return to school and hopes to study medicine after graduating. She is passionate about EDS Awareness.

By SARAH CARTY FOR DAILY MAIL AUSTRALIA

For many people, dislocating a joint can result in intense pain and hours spent in the emergency room. Now imagine dislocating your joints up to 20 times a day, which is the unimaginable reality for 15-year-old Mya Lilly Hurst

The teenager from Nunderi in northern NSW has been diagnosed with type 3 Ehlers-Danlos Syndrome, a rare connective tissue disorder with no known cure, which has left her confined to a wheelchair for the past two years.

The smallest movement can cause chronic pain for the young girl. Mya Lilly dislocates her shoulders, jaw, collarbones, elbows, wrists, fingers, ankles, hips, knees and toes everyday. Even a laugh can leave the youngster with broken ribs.

Mya Lilly Hurst suffers from type 3 Ehlers-Danlos syndrome

The 15-year-old is so fragile, she dislocates her ribs every time she laughs

She has broken 10 bones in her life and dislocates up to 20 joints a day

Mya Lilly is also allergic to any form of pain relief

She was only diagnosed with the disorder in April 2014

The spectrum of Ehlers-Danlos varies and unfortunately for Mya Lilly, she has been diagnosed with an extremely complex and severe case. To make matters worse, she is allergic to any form of pain medication which could give her some relief from her continuous suffering.

Mya Lilly said the easiest way to way to explain her condition is that her body has faulty collagen, which causes her body to fall apart sporadically.

‘Collagen is best described as the glue that keeps your body together. Without collagen, all my joints from head to toe dislocate, sublux and fracture endlessly and the pain is debilitating,’ she told Daily Mail Australia.

Mya Lilly can’t even brush her teeth without dislocating her wrists and has ended up in hospital in the past after trying to fill up her water bottle.

The teenager from Nunderi in northern NSW has been diagnosed with type 3 Ehlers-Danlos Syndrome, a rare connective tissue disorder with no known cure, which has left her confined to a wheelchair for the past two years

‘My dislocations are quick, my bones pop in and out in seconds, but it is the aftermath of ligament and soft tissue damage that each dislocation causes that leaves me in so much pain,’ she said.

From then on she was continuously in and out of hospital with broken, fractures and dislocated bones. The smallest movement could mean weeks in hospital for the then eight-year-old girl, who loved to dance and play school yard games.

The smallest movement can cause chronic pain for the young girl. Mya Lilly dislocates her shoulders, jaw, collarbones, elbows, wrists, fingers, ankles, hips, knees and toes everyday. Even a laugh can leave the youngster with broken ribs

‘While all my friends were having fun and hanging out, my primary school years quickly turned to endless doctor’s appointments, specialist visits and hospital stays with my parents who were desperately searching for answers,’ she said.

By the age of 12, she was tearing the ligaments in her ankle daily. Just walking along flat ground and picking up a glass of water became challenging for the child. She was tested for many illnesses but the tests always came back above average.

‘I felt like no one could help me, one specialist said to my mum “Do you think she may be making this up, is there something at school that she’s trying to avoid”? Needless to say that was the last time we saw that doctor.’ she said.

The spectrum of Ehlers-Danlos varies and unfortunately for Mya Lilly, she has been diagnosed with an extremely complex and severe case. To make matters worse, she is allergic to any form of pain medication which could give her some relief from her continuous suffering

Mya Lilly said the easiest way to way to explain her condition is that her body has faulty collagen, which causes her body to fall apart sporadically

In Easter of 2013, Mya Lilly’s right ankle couldn’t take it anymore, it was so weak, damaged and continually sprained. She was suffering chronic pain and could not bear any weight on it. She was forced to hobble around on crutches or wear a moon boot.

‘I was missing so much school and all my years of health issues were really taking their toll,’ she said.

In January this year, the decision was made by a paediatric lower limb specialist that a right ankle lateral ligament repair was the only available option to regain stability in her foot. Everything that could have gone wrong with the surgery did and Mya Lilly woke up in indescribable pain.

‘No matter what they gave me no one could get my pain under control,’ she said.

In her 15 short years, Mya Lilly has broken ten bones and suffered hundreds of dislocations and subluxations. At the age of four she had her first major surgery, after breaking her elbow in two places

‘Then the allergic reactions began again. I couldn’t breathe, I couldn’t see, my body felt like was on fire, covered in hives, I was hallucinating, scratching my body raw. My right arm went into an uncontrollable spasm shaking and jolting itself into the air, this went on for days. Still no doctors could give me an answer to all my medical problems.’

Finally in April 2014, after years of endless pain, a Paediatric Rheumatologist on the Gold Coast diagnosed Mya Lilly with stage 3 Ehlers-Danlos syndrome.

She is now in a wheelchair full-time and needs 24 hour care. She takes part in hydrotherapy sessions twice a week but there have been many setbacks with dislocations.

In Easter of 2013, Mya Lilly’s right ankle couldn’t take it anymore, it was so weak, damaged and continually sprained. She was suffering chronic pain and could not bear any weight on it. She was forced to hobble around on crutches or wear a moon boot

In January this year, the decision was made by a paediatric lower limb specialist that a right ankle lateral ligament repair was the only available option to regain stability in her foot. Everything that could have gone wrong with the surgery did and Mya Lilly woke up in indescribable pain

Mya Lilly misses being able to walk around a room, showering on her own without it being a big deal and just jumping into a car and hanging around with her friends.

Her wish-list doesn’t read like your average 15-year-old schoolgirls. Instead of iPads and the latest in fashion, Mya Lilly’s biggest wish at the moment is to raise enough funds to buy a car that will fit her electric wheelchair.

When asked if she had any other wishes that were unrelated to medicine, Mya Lilly found it hard to think of one and chimed in that her main priority was the electric car and to modify her house to make it wheelchair friendly.

‘Then the allergic reactions began again. I couldn’t breathe, I couldn’t see, my body felt like was on fire, covered in hives, I was hallucinating, scratching my body raw. My right arm went into an uncontrollable spasm shaking and jolting itself into the air, this went on for days. Still no doctors could give me an answer to all my medical problems,’ she said

With the help of family members, Mya Lilly has set up a fundraiser page, with her mobility the number one objective. She said her mother has back pain and is finding it hard to put her manual wheelchair in their car.

Under the supervision of a paediatric pain specialist she has been trialled on multiple narcotics/opiods but has been told it is classed as ‘too life threatening’ to continue to trial anymore options. Mya Lilly believes this has left her with no other option but to face a life of chronic pain.

This Wednesday Mya Lilly is going back to mainstream school at Murwillumbah High School. the brave 15-year-old hopes to complete year 11 and 12 and get her HSEs so she can go on to study medicine.

Her wish-list doesn’t read like your average 15-year-old schoolgirls (Pictured here at 9-years-old). Instead of iPads and the latest in fashion, Mya Lilly’s biggest wish at the moment is to raise enough funds to buy a car that will fit her electric wheelchair

Under the supervision of a paediatric pain specialist she has been trialled on multiple narcotics/opiods but has been told it is classed as ‘too life threatening’ to continue to trial anymore options. Mya Lilly believes this has left her with no other option but to face a life of chronic pain

It is a disabled friendly school and Mya Lilly is most excited about being around older people again.

‘Even before my health went downhill I wanted to study mental health,’ she said.

‘I wish people would just take five minutes to look up Ehlers-Danlos syndrome to raise awareness.’ she said.