Teenage Girl Who Hasn't Eaten For Three Years Because Of Rare Medical Condition Shares Her Dream Menu




Ylena Green can enjoy the taste of her favourite dishes, like her mum’s cheesecake, lasagne, and macaroni and cheese, by tasting but then needs to spit it out in to a napkin.


Ylena Green could not tuck in to her Chinese takeaway, which she had ordered to celebrate her 18th birthday with friends, as she has not been able to eat for three years due to a rare, genetic disorder.

The teenager has Ehlers-Danlos Syndrome (EDS), which affects the connective tissue of the body.

Ylena can enjoy the taste of her favourite dishes, like her mum’s cheesecake, lasagne, and macaroni and cheese, by tasting - but then needs to spit it out in to a napkin.

Her stomach and intestines cannot digest food so she has to be fed via a line into her heart, which pumps liquid nutrients into her bloodstream.

So when she marked her milestone birthday in February, she could only taste her food by ‘sham eating’, as her family – and other EDS sufferers – call it.



Ylena has a very rare medical condition (Image: Cover Images)



The condition has left her hospital bound (Image: Cover Images)


Ylena would love to eat her favourite foods (Image: Cover Images)

Her dad, Martin, 58, likens the practice to wine-tasting.

Ylena from Haywards Heath, West Sussex was diagnosed with EDS when she was 14, but her condition, which weakens the joints, worsened days after her birthday when she dislocated the part of her skeleton for turning her head – leaving her bed-bound and requiring round-the-clock care.

It means that she can turn her head 110 degrees ‘almost like an owl’, but this would break her neck, leaving her paralysed. It could also result in her death.

Ylena wears a neck brace at the moment, but her life is fragile and doctors have warned that without surgery she could die within one or two years as her condition deteriorates.

So her family, including mum Letitia, also 58, are appealing for help to raise £90,000 for complex procedures – not available in the UK. Only two surgeons in the world can perform the operations.

Martin, who works as a graphic designer, said: “Our daughter was living a reasonable life until early this year. Now it’s like she’s in a prison. It’s not a life for a teenager.



On her 18th she couldn't sallow the take away she longed for (Image: Cover Images)

the condition has caused her to lose her hair (Image: Cover Images)


“Her mum and I are devastated for her, we’re heart broken every day. She has good parts of the day and bad, and our job is just to keep her spirits up.”

As a child Ylena did not show symptoms of EDS, which include loose, unstable joints that dislocate, skin that bruises easily, problems with internal organs, and dizziness after standing up.

She enjoyed swimming, gymnastics and ballet, but as a teenager her knees and wrists began to dislocate and she had to be careful what she did. In July 2014 she collapsed and was diagnosed with the condition.

She and her family tried to maintain a normal life, she went to college and enjoyed gigs.

But in February she dislocated her skeleton, leaving her bed-bound. She only really leaves the house now for very essential hospital appointments and her dad lifts her in to a motorised wheelchair.

She also has a condition called craniocervical instability, which means the ligaments in her neck are too weak to support her head so the spine squashes the brain stem under the weight of the skull.

Ylena is also now experiencing intermittent loss of feeling in her hands and legs. She suffers with extreme nerve pain, which has spread down her back, and has become so sensitive that Ylena says her back feels like it is ‘on fire’ to the slightest touch.



Ylena tries to live a normal life (Image: Cover Images)



She cannot digest food
The surgery has an 80 – 90 per cent success rate, but the family must raise £90,000, which includes this, plus the cost of an air ambulance if needed, accommodation, and to support them while Ylena recuperates.

Martin said: “Ylena has said it would be great if the surgery could happen around or before her next birthday in February 2018.

“It’s not every teenager’s birthday wish, but it would be the biggest present she could get. She is desperate to become mobile and independent again.”

To donate, visit just4children.org/children-helped2017/helping-ylena-lucy.


Source: U.K Mirror
Teenage Girl Who Hasn't Eaten For Three Years Because Of Rare Medical Condition Shares Her Dream Menu Teenage Girl Who Hasn't Eaten For Three Years Because Of Rare Medical Condition Shares Her Dream Menu Reviewed by Elora Akpotosevbe on November 03, 2017 Rating: 5

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