We have opened this account in hope you may be able to help us in the awful situation we have found ourselves in.

We have a little boy with a diagnosis of Angelmans syndrome.

Angelman syndrome is a rare genetic condition that affects the nervous system and causes severe physical and learning disabilities.

Although not life limited, Harrys condition means he will need a huge amount of assistance for his entire life.

Harrys a gorgeous little boy. So happy and loving. He has been so brave and tackled all the struggles he faces with a big smile and infectious laughter.

The new power chair Harry is due is understandably alot bigger and heavier than his existing chair meaning not only will the current vehicle not cope with the size and weight but the secure restraints are also unsuitable.

After very lengthy and emotional conversations with the motability foundation they have explained as Harry is under 16 the affordability assessment for the deposit is our responsibility. In addition to this as both myself and my husband work and are not in receipt of any kind of means tested benefits we would not qualify for any help in funding this deposit.

We are expected to some how come up with almost £10,000 to fund the WAV deposit.  Its absolutely insane.

The WAV vehicle is an absolute necessity for Harry, this is not a luxury item. Without this he will literally be housebound for 6 years. We won't be able to get him to hospital, appointments, school, respite etc. He won't be able to come on family day trips, holidays. Its just so unfair he is being penalised for his condition and us working.

We totally appreciate this is a huge amount of money and would never ask anyone for this amount of help.  All we are asking is for any help possible towards the payment. 

Thank you so much for taking the time to read this.

Carys & Liam Taylor
Harry's parents x