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Girl's Rare Disorder Sparks Global Fundraising
25 Nov
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.
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.
