I am fundraising for Neve, my brave and beautiful 9-year-old daughter
who has battled with Dravet Syndrome since she was 4-months-old. 

Dravet Syndrome is a catastrophic epilepsy syndrome that means Neve has had literally thousands of seizures and her condition affects every aspect of her life. She is Autistic, is cognitively and developmentally delayed and has difficulties with her gross and fine motor skills. Her seizures are life threatening and there is no cure.

We have worked tirelessly to ensure that Neve has the best life possible and have recently started adaptations to our home to provide Neve with a downstairs recovery/therapy room and an adapted bathroom. 

Neve can sleep for up to 3 hours after a seizure and is now too big to carry upstairs. She needs a bedroom downstairs in which to recover and this room will also double as a space in which to do her daily physiotherapy. Neve is also doubly incontinent and so an adapted, downstairs wet room will mean that she can be cared for more easily and may even allow her a little more independence as she gets older.

Funds raised for Neve will help pay for:       

- Disabled fixtures and fittings in the wet room including a chair and grab rails

- Air-conditioning in the bedroom as Neve’s seizures are frequently triggered by overheating. Neve’s condition means that she cannot regulate her own body temperature and so overheating is a real issue for her on a daily basis.·        

- A wall-mounted, pull-down bed so that the space can be dual-purpose – for both post-seizure recovery and physiotherapy.·        

- Purpose built storage for the many items of medical 'kit' that Neve has including oxygen, suction machines, heart rate/oxygen monitors etc

Any additional funds raised will be used for Neve’s ongoing therapies, which include Occupational Therapy, Hydrotherapy, Cranial Osteopathy, Music Therapy, Special Needs Yoga and Special Needs Dance.

Neve really is such a special little girl. She smiles and giggles and brings us so much joy. She battles her condition with incredible bravery and your donation will be hugely beneficial to her and us all.

Tree of Hope is a charity that enables families to fundraise through Just Giving and to get Gift Aid. 7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs. 
  
If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects.  If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objects, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.