Michelle Taylor’s daughter Yasmin was diagnosed with a rare condition known as Niemann-Pick disease type C (NPC) when she was seven years old.
The disease, which can present at any age, is incurable and is the result of when the body cannot transport cholesterol and additional lipids within cells.
The cholesterol and other lipids then accumulate in places like the brain and other vital organs, leading to irreparable damage.
Yasmin, who doctors originally said would not live past the age of 12, died of the disease earlier on February 26, at the age of 25.
Yasmin, who was diagnosed with Niemann-Pick disease type C (NPC) when she was seven years old (Image: The Taylor family)
“Despite the hardness of being in 24/7 care, there was just so much joy in her,” said Yasmin’s mother Michelle, from Staveley.
“There was so much goodness, love and happiness – thankfully that stayed right to the end [of her life].”
Since NPC can present itself at any time, Yasmin remained without symptoms until she was seven, enjoying activities like hiking in the nearby Lake District fells.
However, from being a perfectly able little girl in the early years of her life, Yasmin’s health started to deteriorate fast as she grew older.
Michelle explained how Yasmin’s symptoms presented themselves in relatively minor ways to begin with such as with small speech problems and issues with learning at school.
However, symptoms quickly escalated, with Yasmin’s educational progress reversing whilst other children moved forward.
For example, despite knowing how to write her own name, she suddenly was no longer able to do so.
Yasmin also became incontinent, developed epilepsy and lost her speech further in the years that followed.
Yasmin as a little girl (Image: The Taylor Family)
“She was completely aware that she was losing everything,” Michelle said, “because her friends were going forward and she was going backwards and could not keep up with them running around in the playground.
“Her last proper conversation with me was, ‘What is happening to me, mummy?’”
Despite the debilitating diagnosis, Yasmin continued to fight the disease, alongside her mother, father Peter and sister Annie.
Yasmin adored dressing up and getting her nails done, said Michelle.
She also loved being in places where there were lots of other young people.
Asked what her message would be to those who know little about NPC and the impacts it has on those with the diagnosis, as well as their families, Michelle said kindness was key.
“When you see people with wheelchairs, people with special needs, or people not behaving how people would want them to behave, just be kind to the people that are with them, because often we are in pieces,” she said.
After Yasmin’s death, Michelle is now looking to raise awareness of NPC and wants there to be more government funding for research into the disease.
To find out more about NPC, people can visit the charity NPUK’s website.