Published: 06:00, 25 September 2020
The full extent of a little girl's degenerative disease may never be known which her mum says has caused the family untold anguish and heartbreak.
Emily Barker, of Broomhill Road, Strood , has described the pain of not knowing what treatment her daughter Mollie needs to combat ataxia.
Ataxia is a group of rare neurological disorders which affect the body's mobility, fine motor skills, speech and in some cases the heart.
Mollie Lawson, four, was diagnosed with the condition when she was 18 months old.
Emily, 32, said: "It is a progressive disorder so every day is different, some days she does really well and she runs and plays in the park without any problem, but she finds slower movements difficult.
"We were told in July it could take up to another year for results due to the backlog in testing.
"We have been told to prepare ourselves for no answers as ataxia is so rare patients do not always get an answer for the type they have, but new ones are being found as years go on."
She continued: "It is very difficult, it's heartbreaking knowing that we may never know.
"It is never going to be a one treatment fits all sort of thing, each type of ataxia needs a different remedy."
The outbreak of the coronavirus has proved challenging for Emily and her family, as Mollie's treatment involves sessions with a physiotherapist to improve strength and co-ordination.
The mum-of-two said: "The effects of lockdown for Mollie have meant she has had all physio sessions cancelled so we work on keeping her active at home, all appointments have been on video call or telephone.
"Lockdown did, however, give us the opportunity for some great family time together making memories."
Todaymarks International Ataxia Awareness Day which aims to highlight the difficulties around diagnosis.
Fundraising efforts for the event have been put on hold due to social distancing restrictions but Mollie's uncle, Andrew Flewin, of Horton Kirby near Dartford , plans to cut off the ponytail he's had for 30 years to raise money for the charity.
The disease affects approximately 10,000 adults nationwide and only 500 children, but these numbers are only an estimate as the condition is not widely known by medical professionals and can be hard to diagnose.