The 14-year-old girl you see standing at the historic Machu Picchu site in Peru during a recent fundraising challenge has undergone an even more remarkable personal journey over the last 4 years.
M is autistic. She chose her own name when, at the age of 10, her life changed forever.
Her mum Ella Vine takes up the story: “She was a top pupil in a mainstream school, receiving merit awards and then, overnight, due to a brain inflammation she was unable to return to school, not even to a SEN [special educational needs] school. She was unable to even leave the house for 8 months at first.”
She was eventually diagnosed as having PANS. It stands for Paediatric Acute Onset Neuropsychiatric Syndrome, which causes autoimmune brain inflammation. It is a difficult-to-treat, chronic and debilitating condition.
PANS also brings with it a lot of mental health and neurological symptoms, like tics, obsessive-compulsive disorder (OCD), anxiety, eating disorders and more.
A better known, subtype of PANS is called PANDAS, which is caused by streptococcal infection.
Learning to thrive
However, PANS hasn’t stopped M or Ella from enjoying life. And, through being home-schooled and finding other support, she has learned to thrive.
Indeed, mother and daughter have gone even further by inspiring others through a book about living with PANS, while M has also set up a YouTube channel with subscribers and given motivational talks at events. They have joined forces again to work on a second book, aimed at helping autistic children and parents to thrive, which should be out soon.
Ella said: “M’s story is important as there are lots of children for whom mainstream education might be not suitable and home education might be the best choice for them. Some parents and professionals may worry about them being home educated, but most children ill with PANS/ PANDAS are unable to attend school for months or years.
“M has thrived by not being pressured into going to school, and she has improved much since. Being supported in an individual way helps her.”
Ealing Council has supported M’s home education with an EHCP (Education and Health Plan) and annual education reviews. Ella said: “They are both supportive and happy with M’s progress.”
She continued: “We think M’s story can help other local families with children with PANS/PANDAS. She has inspired many others to follow their star, but the most inspirational part of her journey is how she overcame enormous challenges.
“The gifts and talents of autistic people need to be nurtured and they excel when they’re supported. M is a proof that it is possible.”
- The first book is available online and is called: Differentiating Autism and PANS/PANDAS Including help with recognition and diagnosis: For parents and professionals
- Ella is happy to provide help and advice for other families with children with PANS/PANDAS, and share experiences with professionals like doctors and teachers, and can be emailed at firstname.lastname@example.org
- Find local advice on special educational needs on the council’s website
- Read about a local comedian’s own experience of SEND.