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Leia’s Legendary Life

Just4Children are fundraising to provide Leia with therapies such as Occupational Therapy, Physiotherapy and Speech and Language Therapy to give her the best chance in life.
£1046
Total raised
5%
£20,000.00
Target
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12 donations

Leia’s Legendary Life

Just4Children are fundraising to provide Leia with therapies such as Occupational Therapy, Physiotherapy and Speech and Language Therapy to give her the best chance in life.

Leia is 5 from Barnet. When Leia was born, we realised early on that something was wrong. She had hearing loss, was struggling to feed and seemed very uncomfortable. We realised after multiple tests that she had white matter damage in her brain, severe kidney problems as well as visual delay, global development delay and heart issues.

The neurology consultant at Great Ormond Street Hospital was very concerned and referred her immediately to palliative care as he did not believe Leia had long to live. Leia was officially diagnosed with RMND1 type Mitochondrial Disease at 7 months old. Leia has epilepsy, CVI, hearing loss, is PEG fed, non-verbal and profoundly disabled. In 2022 she had a kidney transplant, heroically donated by her father, Tom. Leia is a fighter and lives life to the full. She loves school, going for walks, her family and the breeze on her face. She has two younger brothers, Robin and Dylan, who both adore their big sister.

Leia has complex physical and medical needs requiring 24/7 care. Due to her regular hospital admissions it has become impossible for both Tom and I to work full time. However, the costs of ensuring Leia has the care, therapies and support she requires can be extremely high.

Leia does receive some physiotherapy, occupational therapy and speech and language therapy at school, but these sessions are infrequent and, like many families with disabled children we have sought out specialist private therapies in order to help Leia develop and improve her quality of life. In order to benefit as much as possible from private therapies she must have regular sessions. Currently she has weekly OT and physiotherapy sessions as well as holiday intensives in the school breaks. Each 45 minute therapy session is £74, attending at least one session every week. The holiday intensives are around £500 per week.

Leia has severe hip dysplasia in her left hip and has been referred to speak to an orthopaedic surgeon at Great Ormond Street Hospital to discuss major hip surgery. We have been informed that regular professional physiotherapy sessions are the best way to delay and possibly even avoid this surgery. Therefore, for us physiotherapy is not an optional extra but a vital part of Leia’s routine.

We would like to start raising money for Just4Children to provide Leia with her ongoing private therapies to help her live her best life and make the most of the abilities she has. Any money donated to this campaign will be used to support Leia in this way.

Thank you for taking the time to read Leia’s campaign.

Katie (Leia’s Mum)

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