Remarkable Story of Wimbledon Girl’s Fight Against Rare Disease

Remarkable Story of Wimbledon Girl’s Fight Against Rare Disease

Posted by Lady Wimbledon | 27 March 2017 | Community Spirit

No one knows what the future holds, but for one little girl from South West London her life is filled with chronic pain and no sign of it easing up. Olivia, 4 years old, was born with an extremely rare genetic condition called Goldblatt Syndrome. Only 18 children worldwide have been diagnosed with it, which is a remarkably rare form of dwarfism.

Olivia, who lives in Wimbledon, measures only 67cm. Doctors are unsure whether she will grow much taller. Life is very challenging for Olivia. She cannot walk due to muscular weakness and joint pain and has weekly visits to doctors across London that restrict her from having the life of a 4 year old. Rigorous specialised intensive physiotherapy, occupational therapy, and hydrotherapy is done weekly to try to increase her strength and relieve pain.

Olivia is currently under the care of some 20+ doctors at various hospitals across London. Due to Olivia’s unique requirements, it has taken her parents nearly two years to find a wheelchair company willing and able to make an electric wheelchair for her mainstream school in September.

Olivia will be undergoing craniocervical neck surgery at Great Ormond Street Hospital this Summer. Due to her condition, Olivia has neck instability, therefore she needs to have her skull fused to the base of her neck to ensure there is not a risk of permanent spinal damage. An electric wheelchair will give her the mobility she lacks and allow her to be much more independent so she can enjoy life with her family and close friends.

Her mother has launched a social media campaign to raise awareness of the Syndrome and source funding for Olivia’s wheelchair, which is not covered by the NHS. Local people and businesses have been donating their time and money to help. Olivia has collaborated with Wimbledon based online brand ‘GIGILOVESBLAKE’ to design a range of t-shirts and accessories where 100% profits go to funding her wheelchair. Numerous other Instagram based and local businesses have also come forward to help with a photo shoot to promote Olivia’s campaign. Olivia has a strong, happy and determined personality despite her daily struggles. She is truly an inspirational little girl!

For more information about her condition, show your support by making a donation, or to buy Olivia’s products, please go to her website; www.olivialugani.com and follow her on Instagram @sparkling_tiaras. The family hugely appreciates your support.

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