Olivia Lugani - "A girl in a Billion"

Tree of Hope Charity helped raise funds in 2017/2018 for Olivia's medical needs and essential equipment. This account is now closed. We are pursuing a time-sensitive, costly treatment plan from consultants around the world; all solely funded by her parents. Olivia needs school adaptations in her new school in Paris; all of which will offer her the best quality of life. None of this is funded by the social system. We have a difficult journey ahead and all of your contributions will make a difference. Please visit GOFUNDME for our next fundraising effort. https://www.gofundme.com/olivia-lugani-agirlinabillion-medical-equipment

Olivia needs your help. She was clinically diagnosed in January 2013 with an extremely rare genetic form of dwarfism called Goldblatt Syndrome (aka Odontochondrodysplasia/ Spondylometaphyseal dysplasia). After thorough investigations by American, Swiss, French and British doctors, they still not been able to diagnose her molecularly.  Only 18 other children have been diagnosed with Goldblatt Syndrome world-wide. For more info:  www.olivialugani.com 

Olivia is 6 years old and suffers from muscular and joint pain and is unable to walk independently. Due to her condition, Olivia has a severely curved spine and neck (C1/C2) instability. To ensure her safety, doctors are trying to find a solution to stabilise her neck and spine, while weighing the pros/cons of pursuing an invasive procedure on a small-boned body.  Currently, our next steps are uncertain, as they are unsure if she can withstand surgery. We must entrust her doctors to try to offer us the best long-term solution for Olivia.  http://olivialugani.com/how-to-support-olivia/

We live each day, day-by-day. Due to the rareness of Goldblatt Syndrome, Olivia's future is uncertain. We know it is a life-limiting condition, therefore, it is imperative that we offer Olivia all the support she needs and the best quality of life. 

The disease does not allow Olivia’s muscle strength to develop, and her severe spinal curvature and weight of her head on her 67cm sized body, cause her to be unbalanced, therefore she cannot walk and suffers from pain everyday.  

We are trying to raise essential funds to enhance the world around Olivia and offer her more independence. By funding these adaptations, such as a hoist system, computer technology, a specially-designed toilet system and shower room, she will have the required facilities for her long-term needs. 

As Olivia's condition is so rare, the burden of care must fall on her parents to pay for expensive, privately-funded, bespoke-made medical equipment, treatment, and costly adaptations. 

Please DONATE today to support Olivia's needs. 
Your donation to this campaign will solely benefit Olivia, no one else. She would greatly appreciate your contributions towards essential equipment. We have compiled a list of equipment to help her reach her full potential, just like any other child. 

Please DONATE today to support Olivia's needs.  She would greatly appreciate your contribution. 
http://olivialugani.com/how-to-support-olivia/
 
We compiled a list of equipment to help her reach her full potential: 
- Specially-adapted steps to access WC at her new school and at home: EUR 9.000
- Height-adjustable sink in the disabled bathroom of her new school and at home: EUR 7.000
- Height-adjustable desk at Olivia’s new school: EUR 3.000
- Geberit Aquaclean shower toilet: EUR 5.400
- Specially designed Bi-Valve orthopaedic corset to limit further spinal curvature recommended by doctors at Necker Hospital: EUR 5.000
- Wheelchair lift for wheelchair-accessibe vehicle: EUR 7.000
- Specially designed bathroom: EUR 18.000 (Bathtub with hoist seat, personal-cleaning toilet, height-adjustable sink, bespoke steps leading to toilet)
- Specially-made tricycle: EUR 2.200

Donations can be made to this GoFundMe campaign using most credit and debit cards. Any donation is welcome and will solely benefit Olivia. 

PLEASE REGISTER on Olivia's website www.olivialugani.com to follow her progress. Befriend her on Instagram (@agirlinabillion), twitter (@olivialugani) and Facebook (Olivia Lugani).

Thank you for your continued love and support. 

British Pound Bank transfers: 
Account Name: Olivia Lugani 
Bank: HSBC UK 
Sort code:  400730
Account: 72468654

Bank Transfers for International Donors:
ACCOUNT HOLDER: Mme Stephanie Brendel
IBAN/RIB: FR 76 30066103610002040990139
BANK: CIC

#agirlinabillion #raredisease #fundraise #dwarfism #awareness #inclusion #goldblattsyndrome 

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