What is Penelope Vasili's rare chromosome disorder?

Penelope Vasili has 8p inverted duplication and deletion syndrome, a rare genetic condition causing intellectual and physical defects.

How much does Penelope's therapy in Los Angeles cost?

Each three-week therapy block in Los Angeles costs between £10,000 and £15,000, covering flights, accommodation, and expenses.

How does Penelope Vasili communicate?

Penelope uses Makaton sign language and an AAC device, similar to an iPad, to communicate basic needs and feelings.

Home / Health / Girl's Rare Disorder Sparks Global Fundraising

Girl's Rare Disorder Sparks Global Fundraising

25 Nov

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Summary

Penelope Vasili diagnosed with rare chromosome disorder at 18 months.
Condition causes intellectual, physical defects, including nerve pain.
Family fundraises £10k-£15k for intensive therapy in Los Angeles.

Girl's Rare Disorder Sparks Global Fundraising

An 11-year-old girl named Penelope Vasili, residing in Kingston upon Thames, London, has been diagnosed with a rare chromosome disorder at 18 months old. This condition, known as 8p inverted duplication and deletion syndrome, has resulted in intellectual and physical defects, including being non-verbal, low muscle tone, scoliosis, and a painful nerve condition.

Penelope's parents, Stella Tikkirou and George Vasili, have been seeking intensive physiotherapy in Los Angeles since 2018. These therapy blocks are crucial for her progress but are costly, ranging from £10,000 to £15,000 per trip, prompting the family to launch fundraisers to support her ongoing treatment.

Stella Tikkirou, Penelope's full-time carer, describes her daughter as a "very sweet little girl" who is happy and loves music and books. The family focuses on cherishing each day, managing Penelope's complex needs and advocating for her continued care through their dedicated fundraising efforts.

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