Nicola Down spent her first wedding anniversary in intensive care and fears she will not be able to come home
Nicola Down, right, and her wife Chloe(Image: Chloe Down)
In summer last year, Nicola Down was determined to walk down the aisle without the use of her wheelchair. The determined 28-year-old, who was born with a rare genetic condition, put her mobility aid aside as she celebrated her “perfect” wedding to her partner of six years, Chloe.
But within a few short months, her health plummeted, leaving her “in a different world” as she receives round-the-clock care in a hospital bed, unable to eat or speak, and forced to communicate through hand-written notes.
Her wife Chloe, 30, said: “She’s no longer able to eat or drink. She struggles massively with mobility. She can barely speak. Now she struggles even with a whisper, so communication is very difficult for her.
“It’s difficult to see the decline and how fast things can happen. We got married a year ago, and now on our first wedding anniversary she’s in intensive care. It’s two completely different worlds.
“She was adamant she didn’t want to be in a wheelchair at the wedding and wanted to walk down the aisle. The honeymoon, everything was perfect. Then within a matter of months she went into a huge downward spiral.
“It’s an horrific thing to see and her condition is so unpredictable. You have no choice but to take every day as it comes because it could be completely different in a week. Every day is terrifying. I’m scared that this is the reality we’re faced with.”
Chloe and Nicola spent their first wedding anniversary in hospital after Nicola’s condition took a nasty turn(Image: Chloe Down)
At the age of six, Nicola, from Bootle, was diagnosed with Neurofibromatosis type 2 (NF2), a rare genetic condition which causes non-cancerous tumours to grow in the brain, inner ear and spinal cord. There is currently no cure for the progressive condition, which can cause sickness, seizures, hearing and sight loss, and muscle weakness.
Nicola herself lost her hearing when she was 16-years-old, and was blinded in one eye by a tumour. She also suffers from weakness in her face and throat, causing her to be hospitalised repeatedly with aspiration pneumonia, caused by foreign substances such as food or saliva being inhaled into the lungs.
As most people with NF2 have a drastically shortened life expectancy, the 28-year-old now faces the heart-breaking decision of planning her own funeral if her condition does not improve.
Chloe said: “After what the doctors have said, she is making preparations. She has written her will and she’s looking at coffins and cremations and flowers, and picking music for her funeral. It’s so upsetting.
“She’s communicating with a whiteboard and she keeps writing ‘I’m 28, I don’t want to die’. I try to comfort her and be strong for her but at the same time it just breaks your heart.”
Nicola’s rare genetic condition, NF2, left her unable to walk, eat or speak(Image: Chloe Down)
The couple are hoping to crowd-fund money for wheelchair-friendly adaptations in their home, and for carers to look after Nicola while Chloe works full-time.
While unable to communicate through talking due to her illness, Nicola wrote: “The past year I have lost the ability to talk, eat (I now have a feeding tube in my stomach), can’t cough or shout. I have also become weaker and have difficulty walking and now rely on a wheelchair and walking aids, and I am at high risk of aspiration pneumonia and death.
“I am currently going through round three of aspiration pneumonia. I have been told if it gets worse I will have to be ventilated and possibly get a breathing tube in my neck and would need round the clock care, it could possibly kill me or lead to a cardiac arrest and I have been told I am too weak for resuscitation.
“This is what brings me here, I am trying to raise money to help towards adapting our house, so it is wheelchair friendly and so it has everything that I need downstairs, as I will no longer be able to go upstairs. Also for help towards carers for when I go back home. I am also doing this to help with funeral arrangements if I don’t make it through.
“I could not have got through this past year without the support of my loving and caring wife Chloe and I really don’t want to leave her struggling to pay for everything, including my funeral, when I know it is going to be hard enough as it is.”
Chloe and Nicola on their wedding day last year(Image: Chloe Down)
Chloe said: “Nicola is now out of intensive care which is obviously good news, but we have been informed that if she’s admitted again it would be extremely likely she would have to be ventilated, and because of how weak her throat is, if they had to do a tracheotomy she’d have to go into a care home because she would need 24-hour care.
“There’s still a chance she will come home. What that’s going to look like, I have no idea. I think its going to be something very difficult to manage because every second counts, and if she’s home alone, something terrible could happen.
“I’m hoping they can find some solutions to help her stop being sick, and that we can get some care assistance. Up until now she’s not had carers or anything like that. At the moment, that’s about as far forward as I can look.”
Nicola’s online crowd-fund can be found here: https://www.justgiving.com/crowdfunding/chloe-down