This is Jada-Lea who to us is just our special daughter but in the medical world she is a rare individual as she is the only person, apart from one other in Japan, who has a life limiting illness, 'Duplication of Chromosome 19'.
What this means in simple terms is she can not do things for herself which for most people are not something that they would even think twice about. For example for Jada, feeding is required through a peg (tube fed), she cannot walk or talk, she constantly has chest infections which for her means she is in hospital an awful lot. She takes a lot of medication as she has numerous challenges amongst theme alongside sleep disturbance.
In 2016 her family had to prepare to say goodbye to our little girl Jada as we were told she had 48 hours to live on life support, which she had been on for three weeks. Thankfully by a miracle she pulled through, which was once again beyond what doctors thought would happen.
She is so far beating the doctors opinions as there is no high life expectancy for Jada which is hard for her family to face as to them she is still their little girl (as you can see above she's a daddy's girl galore!)
Jada-Lea lives at home with her brother, cousin and parents. But this is not easy for her family. The reason why the family need the money is not to make life easier but to make life reasonable as Jada needs her own room which is accessible for her wheelchair and equipment which allows her parents to do daily tasks for her which is vital for her life.
The following items is equipment or accessories which is vital for Jada to be able to participate in life just like any other individual:
Laser Star Projector: £139.00
Visual Effects Sensory Bag: £99.00
Fibre optics & light source: £370.00
Sensory Cylinder: £260.00
Bubble Tube: £1,500
Hospital Bed: £3288.12
Interactive bubble wall: £1,914.00
Bubble Tube Mirrors: £164.97
Bubble Tube Plinton: £369.99
P Pod: £712.25
P Pod Trolley: £653.65
Jada has not been on any trips or holidays in a long time so any additional funding could go towards a trip of a life time as for her we don't know how long life is going to be.
- Norma Odain-Hines
- Sandra Hawkins
- Steve Thorpe
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