Motor Neurone mum's Â£25k bid to stay in her Lancaster home
A mum who has Motor Neurone Disease has described the heartbreaking moment she told her little boy she was going to die.
A mum with Motor Neurone Disease has received overwhelming support to help her continue to live with her family.
Hundreds of people including the Mexican embassy have pledged cash to a JustGiving page set up to allow the mum-of-two to continue to live with her family.
As her mobility worsens the page has been set up to raise £25k to help the family with their plans to adapt their Lancaster home.
Husband Guy has worked hard to stay one step ahead of the disease to avoid Nayeli going into a hospice away from her two boys, Oscar, nine and Mateo, six.
“The first time Oscar asked me about it was when I was reading to him at night,” said Nayeli, 40.
“He looked at me and he said ‘I know what happens to poorly people that don’t get better’, my heart just sank.
“I said okay and he looked at me straight and said ‘are you going to die?’, I hugged him and said yes I am not going to get better, we cried for a while, hugging.”
“Every instinct as a parent is to protect your children from pain but we can’t with this, all we can do is be honest and give them the best childhood we can,” said Guy Cookson, 40, a partner at Hotfoot Design.
“Mateo said what happens if you die as well and your first instinct is to say don’t worry but then that’s not a satisfactory answer.
“I said well you would go and live with your uncle and auntie in London and he said ‘I don’t know how to drive’, if they have a solution in their mind they can cope better.”
Adaptations have already been made to the home which includes a wetroom, a stairlift and aids for Nayeli’s walker and electric wheelchair.
Although plans were in place for more work to be done, friends and the wider community have offered their help.
A fundraising page set up by friend Kelly Louise Smith has raised more than £7,000 as the Guardian went to press and has attracted attention from Mexico, where Nayeli is originally from.
“We weren’t aware Kelly was going to do this,” said Guy.
“We don’t want to rely on people but it is very humbling that people are there for you.”
Nayeli began to feel unwell in 2012 after a fall and the family believed this was due to a knee injury from her previous football matches.
Before her illness Nayeli could be seen running up mountains with her football team, chatting happily to other mums at the school gates and taking her eldest shopping.
“I used to run a lot, I remember the last time,” said Nayeli, wiping away tears.
“I was crossing the street, the green man was flashing, I ran and I fell over my feet.
“I can remember the sound, where I was, by the Water Witch, what I was wearing, how I felt.”
Balance problems soon came and after two years of therapy the family received the devastating diagnosis shortly after the birth of Mateo.
“I still have the piece of paper of the diagram of my spine and brain where they pointed to me and said this is not working,” said Nayeli.
“Within seconds I was trying not to cry, all I could think of was Guy and the boys, what will happen to them?
“I thought, okay I have got the most horrible diagnosis, now let’s see and propose what we can do.”
Guy said: “The diagnosis was so shocking, we knew something was seriously wrong but we thought it was treatable.
“The first thing she said is sorry, her first thought is not for herself, she is thinking of the family.
“I rang my mum straight away and that makes me sad because Oscar and Mateo won’t have that in the future.
“It is not a fight, you can’t fight it, you need to adapt to it in a way that’s possible.”
A care team was shortly appointed to help Nayeli with personal care and the children also moved schools.
Since diagnosis Nayeli and Guy, who have been married for 13 years, have prioritised family moments, taking trips out and holidaying in Iceland.
The couple hope to visit Nayeli’s family in Mexico but want to get the house sorted as soon as possible.
“We try to live in the moment but we realise there aren’t many moments left,” said Guy.
“We need to get the house sorted so it is ready because soon Nayeli won’t be able to walk,” said Guy.
“This disease forces you to think about the future, it took me a long time to accept that, you think things get better, children grow up, they get stronger, whereas Nayeli’s condition gets worse, she is going backwards.
“She fell in the hallway just last week, it is very hard to stay in front of this disease.”
The family are hoping to convert downstairs into a bedroom and living space for Nayeli so she can use her electric wheelchair inside the house.
Nayeli is losing ability in her legs, feet, hand and spine but the rare disease affects people in different ways.
Nayeli’s friend Rob, who is the same age and was diagnosed with the condition on the same day, is still able to walk and drive.
As well as support from family and friends the family are also grateful to the Motor Neurone Disease Association and the Neuro Drop In Centre, based in Lancaster.
“Our family and friends have been incredible, even just coming round and listening to us,” said Guy.
“The school have been incredible, the Neuro Drop In, the NHS, all of the care team.”
Now the family are also receiving support via Kelly Smith’s JustGiving page.
The mum-of-one met Nayeli at the Neuro Drop In, where she offers her service as a beautician for members and visitors.
When Kelly, 35, overheard the couple asking for builder recommendations she knew she wanted to help.
“It’s amazing how it’s snowballing, so many people want to help,” said Kelly.
“It is not often someone from the Mexican Embassy emails you. I’ve had amazing offers of help.
“Nayeli is kind, she has a good sense of humour, she is family orientated and has a wonderful heart and does her best for her family.”
Kelly is holding a quiz at The Brown Cow Pub, Lancaster on June 26 to go towards fundraising.
To find out more about Motor Neurone Disease please visit www.mndassociation.org/ or the Neuro Drop In Centre visit https://neurodropin.org.uk/.