A wheelchair for Willow

We have been overwhelmed with the response from what was just a Facebook post sharing our disbelief and frustration . This page has been set up at the request those who saw it and the unbelievable kindness of our friends for which we are grateful beyond words.

My niece is severely disabled. She has just turned 12 and is non-verbal and has the behaviours and mental capacity of a 0-12 month old….but the body of a 12 year old.

She can walk but doesn’t walk like you or I. It’s sporadic and with encouragement and certainly not independently as an adult. If she decided she was going to run out into traffic she would. As she walks, just as a baby does, she’ll often drop to the floor because she feels like it….if not in a wheelchair when out, this could be in the middle of the road or in a muddy puddle or wherever she felt like it.

After battling for two years to get her a bigger wheelchair (because children have this habit of growing!) and being fobbed off (and after a review being done at her school without my sister present!), she finally managed to get a proper review today.

According to the NHS, she is not eligible for a wheelchair because she can “walk”. The fact that because of her mental condition she could walk under a bus without thinking twice is not taking into consideration. Funding rules have changed meaning that families in this situation now have to either go without a wheelchair or fund their own.

Bear in mind that families with children with special needs often can’t work or work many hours because of the needs of their child so they are already financially disadvantaged from the get go. And no one can plan for this; whether your child is born with special needs or perfectly healthy is in the lap of the gods.

The fact that my sister is also losing her own sight to Retinitis Pigmentosa is an added level of complexity in this case and in trying to keep a child safe but this makes no difference to their decisioning.

I've been asked to set this page up so that a wheelchair with the necessary adaptations (i.e. head restraints, chest straps, etc.) can be bought for her to ensure that she can continue to travel to school safely and so that she can continue to go out with her family and experience the world safely.

The target has been set on GoFundMe at £1,000 as we needed to put one in but I will update this tomorrow with the actual cost as we complete our research into the procurement and pricing. It wasn't something we'd ever looked into before as we never imagined that the NHS wouldn't provide for her needs and keep her safe.

Thank you