Jessica Kill has been told she may have just three months to live, but, as single mum, she is determined to spend more time with her children.
Jessica, from Birmingham, is desperately trying to raise money so she can afford to fly to America for an operation she hopes will save her life.
Two years ago the 38-year-old was diagnosed with Ehlers-Danlos syndrome (EDS) - a rare inherited condition that affects just one in 5,000 people worldwide and impacts the body's connective tissue.
The syndrome affects her heart rate, blood pressure and digestion and also makes her prone to dislocating her joints.
But that is just the start of Jessica's problems. She has recently found out she also has two related conditions - craniocervical instability and chiari - which will eventually kill her if left untreated.
According to the Pain Relief Foundation, one in 15 people with EDS go on to develop craniocervical instability.
The condition affects the brainstem, upper spinal cord, and cerebellum and has meant Jessica now has to wear a neck brace.
Jessica has also be diagnosed with chiari - a condition where the lower parts of the brain have been pushed downwards towards the spinal cord, so they are below the entrance to the skull.
"This is causing havoc in my body and is slowly stripping me of normal body function, energy, independence and eventually my life," Jessica says on her fundraising page.
"Week-on-week my neurological symptoms are worsening. I have numbness/weakness and nerve pain in my arms, legs and hands. Walking is now very challenging for me. My speech has become slurred and I have constant tinnitus and increasing difficulties with hearing and visual disturbances."
Jessica, who worked as a project manager before she was forced to give up work, says being diagnosed with the three conditions was a "massive blow".
But she was even more shocked to learn that surgery for EDS sufferers is not yet available in the UK and Europe.
She's now hoping to raise £150,000 so she can receive cranial fusion and decompression surgery in America. So far she's raised more than £21,000.
"My only hope is to travel to the US where surgeons have developed a way to carry out cranial fusion and chairi decompression surgery on patients with EDS which has so far been very successfully with a 95% success rate," she says.
Jessica has been told she needs to have the surgery within the next three months if it's going to prevent irreparable damage to her brain.
"During this whole terrible time in my life I have only broken down once and that was due to anger and frustration that on top of feeling so poorly, I have been left to fend for myself medically. Words cannot even begin to describe how let down I feel," she says.
"At 38 years old I have too much to live for. I want to be independent again and go back to being the funny mummy that fixes everything, instead of one that increasingly, by the day, finds it difficult and painful to even smile."
You can read more about Jessica's story or donate money to her crowdfunding page here.
