Winslow family launch GoFundMe page in appeal to help their daughter with extremely rare genetic condition

Annabel Trueman
Annabel Trueman

A family from Winslow have launched a GoFundMe page appealing for help to get a new driveway at their home in order to support their seven-year-old daughter, who has a very rare condition.

Annabel Trueman was born in 2012 with a rare genetic condition, meaning that she suffers from quadriplegic cerebral palsy, uncontrolled epilepsy, severe sight impairment and swallowing problems.

Annabel requires round the clock care from her parents and cannot walk so has to be transported in a specialist wheelchair buggy.

After saving up for many years, her parents finally managed to purchase their first house in Granborough Road, Winslow.

They are currently fighting to get the property adapted to make it easier for Annabel however they have hit various stumbling blocks as part of that process.

Her dad Paul Trueman said: "We are currently going through the process of getting the property adapted for Annabel.

"This would mean that she could have a downstairs bedroom and wet room, as she currently has to be carried up and down stairs.

"All of this is quite challenging as she is now seven years old but has the length of a nine to ten year old.

"We have also been trying to have a driveway installed, as we currently have to carry her around 50 metres to the car.

"The driveway is complex, as it is 17 metres from the road to the front of our house, and also will need to rise 1.5 metres from the road.

"We have to cross a housing association footpath, so this incurs additional costs, as we need to apply legal fees and drawings.

"The cost will be around £22,000-£24,000 to have the driveway installed and we have managed to secure £12,000 towards this so far.

"We are currently at the stage of commissioning a company to prepare the drawings and planning application.

"Another complicating factor is that the adaptions to the house cannot start until the driveway has started, as access for the building company would need to be where the driveway goes.

"The benefits cannot be understated because as Annabel grows there will become a point when she can no longer be carried and will be permanently wheelchair bound.

"We will eventually need to have a vehicle which will enable her to be pushed straight into it on her wheelchair.

"The road outside of our property has no pavement and poor lighting so if we cannot get a driveway installed, then our home will not be viable for Annabel."

When Annabel was diagnosed in 2012, a medical expert told the family they were only aware of 80 other people in the UK who had the same condition.

Annabel has two sisters, aged four and 16, who both support her parents in looking after her - Annabel shares a bed with her younger sister who often alerts their parents when something is wrong.

Annabel suffers with sleep apnea and wakes up multiple times most nights.

She also has around 20 seizures per day and has to take a lot of medication to keep the conditions she has under as much control as possible.

Paul said: "We do not know what the future holds for Annabel - unfortunately she won't ever get better, but we are just hoping that she does not deteriorate.

"We still both work - I work as a police officer in London and my wife works part-time - one of us has to be with Annabel at all times.

"As a family, we would be incredibly grateful for whatever help and support you can give us.

"We have always tried to deal with matters for Annabel within the family, but fear that this is a wall we cannot get over without outside help."

The family's GoFundMe page can be viewed at: https://www.gofundme.com/f/help-a-beautiful-girl?utm_medium=referral&utm_source=unknown&utm_campaign=comms_nvzx+help-a-beautiful-girl