Family fear daughter is 'running out of time' due to debilitating condition that makes her vomit up to 100 times a day
A young Brit is worried her time is running out due to a debilitating stomach issue that causes her to vomit up to 100 times per day.
Ella Rake, 22, lives with severe gastroparesis, where the stomach empties food too slowly because the muscles and nerves in the stomach wall are not functionally properly.
In Ella's case, she's been unable to to keep any food down, with her calorie intake very much limited to melon or egg.
She's routed to her home, often curled up in bed, fainting daily, requiring a wheelchair, and losing weight rapidly to the point where she now weighs just over six stone.
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Ella is most concerned about the impact her constant throwing up is having on her heart and is worried she might not survive much longer.
She said: “Everything with my health has just gradually gone downhill. It is really scary.
“My weight is dropping. My bones are very visible and I am just very weak all the time.
“I do worry how much more my body will take before it gives out. I say to my mum all the time that this is it and I am going to die.”
Ella always had problems with her bowels, but her issues were often put down to IBS and anxiety.
At 16, her bladder stopped working and she had to get a catheter, before she was diagnosed with Hypermobile Ehlers-Danlos Syndrome when she was 18.
These tests ultimately uncovered severe gastroparesis, which happened around the same time Ella lost her dad.
"It was a nightmare. Everything was going wrong in my life at the time," she said.
“When I received the diagnosis it was a relief in the sense that I knew what was going on but at the same time when it hit me it was not very good."
Ella's potassium is consistently dropping, which is essential for the heart.
She loses so much of it when vomiting, which had lead to both arrythmias and cardiac rhythm disturbances, both of which are life threatening.
Ella continued: “My main worry is my heart. When I get hooked onto the ECGs and I see the nurses freak out it is really scary to me.
“I lost my dad that way and we have a strong cardiac history throughout my family so it does worry me that this could be what will finish me off.”
Because of her condition, Ella has faced stomach obstructions and once didn’t have a bowel movement for a staggering six months.
Her mom, Vicky Patmore, has set up a GoFundMe page to assist with private treatment, with Ella claiming she was told unless her kidneys are failing, healthcare professionals will not intervene.
Mom Vicky wrote on the fundraiser: "She is running out of options, and I'm terrified she is running out of time too.
“Please help us get the care she needs before we lose our beautiful girl.”
Callum Jones