A father has told for the first time of the serious illness suffered by his baby daughter that has changed his family’s life.

Jabba Riaz, who is a Worcester City councillor for Cathedral ward, and his wife Sajeeda Begum were ‘heartbroken’ when their newborn daughter Zoya was diagnosed with congenital nephrotic syndrome last January.

It’s a very rare condition that affects the kidneys and can be fatal in undiagnosed cases. Often sufferers need a kidney transplant and even before that have to undergo long stays in hospital and aggressive and unpleasant treatments.

Mr Riaz said: “When the news of Zoya's condition broke it was heartbreaking for both of us and the family. As the real life changing effects became apparent the initial shock turned to gratitude and acceptance.

We are grateful that Zoya did not have a more severe life-threatening condition and have come to accept that it is a trial and test for us.”

The little girl spent five of the first six months of her life in Birmingham Children’s Hospital, undergoing constant care and treatment.

She is now out of hospital but still has to be taken for outpatients appointments three times a week.

Mr Riaz said: “We were naturally worried about Zoya's long term life chances and what it may mean and it is normal to have all sorts of thoughts go through your mind. But a period reflection and contemplation helped ease our fears.

“It meant I had to step down from the cabinet to manage our sons whilst Sajeeda stayed at Birmingham with Zoya and eventually leaves her job to care full time for Zoya.”

Support and help came from the family of another little girl, Alishba Shahzad, who has the same condition.

Mr Riaz said: “Alishba and her parents Asia Khatun and Quammar Shahzad gave us hope and inspiration. They have been living with their daughter’s condition for over eight years.

"They comforted us and shared their knowledge and understanding of the often harsh realities of the condition and how to cope with it.

“Zoya and Alishba both have good and bad periods and due to their conditions they are on heavy medication and are prone to fall ill at the slightest turn of the weather or if a virus is around. But they are happy children who bring comfort and joy to us and their families.”

Now Mr Riaz, Mrs Begum, and their friends are holding an event in Worcester to raise money for the hospital.

Mr Riaz said: “We would like to thank all those that have helped us, sent us messages of support and have been there for us in our time of need and beyond. It has been a testing 2017 and this event is to really show gratitude and recognise the brilliant support we have received.”

The fun event will be held at Horizon Community Centre at Midland Road in Worcester between 1.30pm and 5pm on Sunday December 17.

There will be a bouncy castle, face painting and glitter and henna tattoos as well as a jumble sale, a raffle, games for children and plenty of refreshments.

You can also support Birmingham Children’s Hospital through a Justgiving page set up by the two families at https://www.justgiving.com/fundraising/zoya-alisha-renal