UPDATE AUGUST 2023 - £5000 REACHED! THANK YOU AGAIN FOR YOUR GENEROUS SUPPORT - WE NOW HAVE A VAN!

We have just acquired a Ford Transit which we will now be converting in to a Wheelchair Accessible Day Van/Camper so that we can still access the outdoors, spaces with limited changing facilities (like many National Trust places that we love exploring), and our families whose homes aren't accessible but we still want to be able to visit and stay over!  

See below for more updates and what we are still fundraising for with our new target. 

UPDATE AUGUST 2021: THANK YOU TO THOSE WHO SUPPORTED US TO MAKE OUR HOME ACCESSIBLE, RAISING AN AMAZING £3,000. We are so grateful to those of you who have already been a major part of Rosalie's life and our home is wheelchair accessible with hoists and a specialist bath to support Rosalie for many years to come.

We are still fundraising...

We have bought a van and are now starting to adapt it so that we can have an accessible changing facility on day trips no matter where we are. We are also hoping to adapt it to be a camper so that we can go on adventures as a family in it and stay overnight at family and friends homes whose rooms are inaccessible to Rosalie. This will require rails to secure a wheelchair to, ramping and possibly a portable hoist system for transitioning Rosalie from her chair to a bed when she is bigger. We can currently do a standing transition as Rosalie can weight-bear at the moment but both due to her growth and possible loss of skills due to Rett, this may not be possible longer term. 

On current quotes as of August 2023, the wheelchair ramps, railings, fittings, and securings will cost approximately £650 from Braunability. 

Electrics to include solar, batteries, and an inverter that can handle a microwave has been specified and designed by a specialist engineer and will cost just over £3000 from Nomadic Electric (part of climbingvan.co.uk).

Sound deadening, insulation, diesel heater, fan vent, windows (the transit only has windows at the front currently), spare seat (for the non-driver to be able to support Rosalie at the back or for a friend to join us), plus wood for panelling, cabinets, and beds will all add up to an estimated £3000. Much of this we are looking to fund ourselves but we are so grateful for all who have so generously supported our venture so far! See the pics below for Rosalie enjoying the van before its conversion!

Challenges we are doing for 2023:
12th March - Phil and Tina - Surrey Half Marathon - DONE!
1st May - Tina - Milton Keynes Marathon - DONE with a PB!
27th May - Phil and Tina - The Fox Ultra (62km) - DONE in 7 hrs 24 mins!
10th September - Phil and friends - London to Brighton Cycle Ride

ABOUT ROSALIE:

Rosalie is a typical little girl in many ways. She's smart. She's funny. She loves people. She loves animals and she loves music (especially the Wiggles). She loves exploring the world. She laughs a lot. She gets grumpy when she is hungry (like her parents).

Rosalie has Rett Syndrome and this means life for her isn't like most other children. Rett Syndrome is a genetic neurological condition that effects brain development and means that Rosalie is reliant on help with all aspects of life. She understands much of what is said to her but can't communicate verbally. She is currently learning to use an eye gaze computer to help her learn to communicate but this is a very slow process. Physically, she is unable to walk or stand unaided and has limited use of her hands. Rosalie has a PEG feeding tube as she can't drink liquids safely. She has other health issues such as epilepsy and experiences several seizures a day, though we are trying to get these under control. 

Her disability has a profound impact on her life and restricts her opportunities and life experiences. As Rosalie gets bigger it is becoming harder to physically care for her and to address this we have had adaptations done to our house to make it wheelchair accessible. As a family we love going for walks and visiting areas of natural beauty and would love for Rosalie to be able to join us. Any money that we raise will go towards a van and the adaptations required for Rosalie along with providing specialist and sensory equipment that will support and improve her physical and mental health and wellbeing.

Our vision is to create a safe haven for her where we can care for her easily and she can feel safe and content. Your donations will help us make this a reality.

Thank you for all of your support.

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