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Talleulah Knight is back home in Gillingham after life-changing treatement in Milan, Italy

A total of £35,000 has been raised by the community to support a little girl who has undergone life-changing treatment in Italy.

Brave Talleulah Knight is back at home in Gillingham with her friends and family after undergoing life-changing treatment in Italy.

Last summer, seven-year-old Talleulah was diagnosed with a rare genetic disorder called metachromatic leukodystrophy (MLD); she is only the second child in the UK to have the condition.

Talleulah last summer with her mother and aunt, Sally Harper.
Talleulah last summer with her mother and aunt, Sally Harper.

Friends, family and strangers all helped raise the money which helped to support the family's stay in Milan and will now help with Talleulah’s rehabilitation and return trips over the next eight years.

Her mother Rebecca Hopson said: “The fund is a godsend. We truly cannot thank everyone enough. We couldn’t have survived without the funds that have been raised.”

Four little girls have raised £150 by collecting change at local football matches. Molly Tuffin, 10, Megan Alabaster, 10, and Annie Rayfield, nine, from St. Mary’s Catholic Primary, and Ruby Govier, seven, who attends St. Margaret’s Infants School, Rainham, went round with a bucket at home games for Thamesview FC under-12s last season.

Ruby Govier, 7, Annie Rayfield, 9, Megan Alabaster, 10 and Molly Tuffin, 10, with Talleulah.
Ruby Govier, 7, Annie Rayfield, 9, Megan Alabaster, 10 and Molly Tuffin, 10, with Talleulah.

The girls said: “We would like to thank both our parents and all parents of the other teams in the division who helped by contributing during our home games.”

Thamesview FC under-12s are managed by Paul Lichfield and Gary Tuffin and play at Saxon Way Primary School, Gillingham.

Molly’s mother Lisa Tuffin said: “At every home game, come rain or shine, early on Sunday mornings, they all collected for Talleulah during half time at the matches. They all did a fantastic job. Well done girls.”

Back: Paul Lichfield, Rebecca Hopson and Gary Tuffin. Girls L-R: Ruby Govier (7), Annie Rayfield (9), Megan Alabaster (10) and Molly Tuffin (10) with Talleulah.
Back: Paul Lichfield, Rebecca Hopson and Gary Tuffin. Girls L-R: Ruby Govier (7), Annie Rayfield (9), Megan Alabaster (10) and Molly Tuffin (10) with Talleulah.

Talleulah's parents Rebecca Hopson and Nicolas Knight are both carriers of MLD which has a one in a million chance of occurring.

There is no cure for MLD but research is being done in Milan and doctors in the Italian city invited Talleulah for an assessment to see if she could take part in a trial.

Without the treatment Talleulah, who lives with her mother, stepfather Wayne Hopson and stepsister Francesca, eight, could have been confined to a wheelchair within a year and her life expectancy would be about 10 years.

The family went to Milan at the end of September for an initial assessment where they were told Talleulah met the criteria but doctors were unsure if the trial was going ahead.

Talleulah and her mother Rebecca Hopson.
Talleulah and her mother Rebecca Hopson.

After an agonising wait, they received a phone call on November 18, asking them to be back in Italy two days later. The trial used Talleulah’s own bone marrow to create the enzyme needed to fight MLD and the new cells were transfused on December 19. The new cells do not start working for six to nine months after transfusion.

Mrs Hopson, 36, said: “Talleulah remains a happy, determined, beautiful girl, despite the unique ordeal she has been through. She is an inspiration.

“The first three weeks back home were an emotional rollercoaster to say the least but once some kind of routine was established it started to get easier.”

Talleulah has an intense rehabilitation programme with two swimming classes a week and three physiotherapy sessions as well as home exercises.

Talleulah's family and friends at a fund raising fun day last summer.
Talleulah's family and friends at a fund raising fun day last summer.

She has not gone back to school full-time at St Mary’s Catholic Primary, Gillingham, yet but is able to go in for short sessions each week and has daily visits from a tutor.

MLD is caused by an enzyme deficiency which destroys the protective coating around nerves. Without this coating nerves stop functioning properly.

Symptoms include muscle weakness, muscle rigidity, developmental delays, progressive loss of vision, convulsions, impaired swallowing and paralysis.

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