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Funding Zohaib's accessible home and garden

Sayed Zohaib Ali Shah
West Yorkshire

Zohaib is a 5 year old boy with disabilities and complex needs. He will never be able to sit, stand or walk. In the last year it has been confirmed that he has a genetic, degenerative, progressive condition that will only get worse with time. His condition is life limiting and there is very little that he can do.

An accessible home will give Zohaib a fully adapted wet room which will mean he can have all his cares met in privacy and with dignity rather than on a mat in the living room in front of others. It will also mean that he can enjoy a proper shower rather than a bed bath!

Furthermore, he will get a bedroom and doors that allow him to be transported in his equipment from one room to another; allowing him to spend time with family and friends. One of the most transformative things will be that both rooms will be fully equipped with hoisting. This will mean that Zohaib can be transferred from one space to another in a safe and comfortable manner. It will also mean that his family will no longer have to lift him and suffer with the effects of backache!

A fully accessible garden will mean that for the first time in his life Zohaib will be able to go out into this space in a safe manner. A space that most of us take for granted!! Zohaib shouldn't have to miss out on the basic human right of having a home and garden that meet his needs just because he was born with a disability!!

Let's work together to ensure that Zohaib can be cared for safely in his family home. Let's make the latter stages of his life enjoyable, comfortable and dignified! Please help to make his life easier by donating towards this worthy cause. Thank you!!!!!

Zohaib is a 5 year old child who unfortunately has a life limiting, degenerative illness and sadly he is changing for the worse on a weekly basis.

Zohaib has been in rapid decline since April 2023, when I noticed that he was sleeping 24/7. Since this date, we have been in and out of hospital and the longest period spent out of this establishment at one given time is 2 months. Recently, we have been told that he is not expected to live for more than 12 months. However, we know that he may well defy these expectations.

Before April 2023, Zohaib was a very happy, smiley boy who loved social interaction with others. He was always happy and loved listening to nursery rhymes. His favourite was 'wind the bobbin up' to which he could do some of the actions. He loved music and enjoyed tapping the beat back to someone.

Disparingly, all his personality and skills disappeared from April 2023 onwards and subsequent tests have revealed UNC80 gene mutation and mitochondrial disorder. The two conditions are affecting each other making Zohaib's life very difficult. Symptoms of these conditions include epilepsy encephalopathy, uncontrolled movements, hypotonia, significant development delay, scoliosis, loss of skills, brain atrophy and sleep apnea. Zohaib now suffers with all these issues.

As a family we are now fully focused on giving Zohaib the comfort and love that he needs in his home. We hope the adaptions will enable the latter stage of his life to be filled with comfort and contentment ensuring that all his needs can be met with ease.

How much money do you need to raise above the dfg grant?

We need £36,000 above the dfg grant.

How much have you raised so far?

We have raised £16,000 so far and need another £20,000. Please support us to raise this. Thank you.

What stage have you reached in the building works?

The images show that the outside building work has now been fully completed. From tomorrow, work will start on the inside of the house beginning with the wet room.

Keep an eye on updates and new images on this project page along with the giving page.

How long will the works now take?

Hopefully it won't take longer than 6 weeks to complete the building work and then start on the garden. However, this can all be weather dependent.

The outside building work has been completed as can be seen from the images uploaded. From tomorrow, work will begin on the inside of the home. This will start with completing the wet room.

Keep an eye out for new images and constant updates regarding the work, both on this page and on the giving page.

Thank you for your support.

Fundraising target

Project by
Naima Jaza
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