For anyone that knows Maddox they will agree he is a happy, beautiful loving little 7 year old boy.

At first look Maddox appears like any other little one his age.

In August 2024 he went for a regular eye test and was instantly referred for further testing at the hospital. After a first review we were advised he needed another urgent referral. This referral never came despite constantly ringing to be told he had been downgraded and was no longer urgent.

Fast forward to the present day Maddox went to another eye sight test in April this year and had another urgent referral in. Monday 30th June we arrived at Manchester Eye Hospital and by Monday 7th July he has a team of specialist consultants and nurses who now make up his forever team.

Maddox has been diagnosed as having a condition called gyrate atrophy which is a rare genetic disorder that affects his sight. To date there are less than 200 people worldwide who have been diagnosed with this condition. Due to it being so rare there is no cure and very little that can be done to prevent it. There is a suggestion that diet can help slow down the deterioration but without a cure we’ve been told he will lose his eyesight by the time he is 30/40. Currently he has no peripheral vision and we aren’t sure how long this has been his normal.

Naturally as parents we are devastated and struggling to come to terms with this news. Again due to how rare this condition is they won’t give us time frames as to how quick his personal deterioration is due to fear of providing false information or in fact false hope.

We have so many questions that can’t be answered, how long will his eyes see what he sees now? Will he ever be able to drive? Will he need support to do day to day activities.

These thoughts are breaking our hearts and we want nothing more than for him to experience all the things he wants in life whilst he still can.

One of his dreams is to drive a Lamborghini and go to Disney Florida and we will do anything we possibly can to make sure he doesn’t miss out.

We will be looking for any opportunities, testing and trials in the UK and abroad whether that takes us a year, 10 or 20 to hopefully have more knowledge on this diagnosis, help us and others find new ways to adapt and maybe even some day pray there’s a cure.

We hope that through providing awareness and support to others we can make his dreams come true whilst we still have the chance.

Friends and family suggested asking for some help from others who would be kind enough to support his dreams and support us as a family at this challenging time.