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Olivia Lugani

Tree of Hope is helping to raise funds for Olivia's medical needs- Wheelchair, private physical therapy, physiotherapy equipment, computer technology, and several home adaptations; all of which will offer her the best quality of life.  We have a long journey ahead and every contribution will make a difference. 

Olivia was clinically diagnosed in January 2013 with an extremely rare genetic condition called Goldblatt Syndrome (aka Odontochondrodysplasia), a form of Dwarfism. After thorough investigations by American, Swiss, French and British doctors, they still not been able to diagnose her molecularly.  Only 18 other children world-wide have been diagnosed with Goldblatt Syndrome. 

Olivia is 5yrs 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 Olivia's neck, while weighing the pros/cons of pursuing an invasive procedure on a small-boned body. We are currently in limbo regarding next steps. Our trust is in the doctors' hands to help 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.  

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 has a lot of pain everyday.  

Currently, we are seeking funding to adapt our home to allow Olivia access with her wheelchair and offer her more independence. By installing a through-floor lift and bespoke toilet 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 parents to pay for expensive, privately-funded, bespoke-made medical equipment, treatment, and home and car adaptations. 

Your donation to this campaign will solely benefit Olivia, no one else.

Please DONATE today to support my needs

Dream swing for feeling weightless and relieving pain: £350
Wall ladders to encourage upright leg strengthening: £500
Writing desk for small stature children by Smirthwaite and chair for posture control: £850
Heated waterbed to relieve pain: £1,134
Computer technology: cost £1,700
Specially-made tricycle by Theraplay Ltd: cost £1,900
Physiotherapy equipment: cost £4,700
Wheelchair platform hoist for wheelchair accessible vehicle £5,000
 
Home adaptations to meet Olivia's needs: 
Height-adjustable washbasin: £3,300
Through-floor lift: cost £15,000
Bespoke Shower Room and Toilet: cost £15,000

Total cost approximately £50,000

THANK YOU for all of your generous donations to help us raise funds to privately purchase Olivia's electric wheelchair. It has offered her the use of her 'legs!'

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

Thank you for your continued love and support on this journey of life.

Warm regards,
The Lugani Family

GBP Cheques can be sent directly to Tree of Hope for the benefit of OLIVIA LUGANI. We will list your donation as an 'offline donation'. Postal address: Salford House, Salford Terrace, 19-21 Quarry Hill Road, Tonbridge TN9 2RN

GBP Bank transfers:
Account Name: Tree of Hope
Bank: Metro Bank
Sort code: 23-05-80
Account: 21862665
Reference ‘Olivia Lugani'

Bank Transfers for International Donors:

Tree of Hope is able to accept donations from any country, but if you prefer to send via bank transfer
ACCOUNT NUMBER: 401014 31498045
ACCOUNT HOLDER: Tree Of Hope
ADDRESS: Salford House, Salford Terrace, 19-21 Quarry Hill Road, Tonbridge, Kent, TN9 2RN
IBAN: GB27MIDL40101431498045
SWIFT/BIC CODE: MIDLGB22
BANK: Metro Bank
BANK ADDRESS: One Southampton Row, London, WC1 5HA

NB: Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to Olivia

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