The life of a baby girl ‘hangs in the balance’ after an NHS committee ruled they would not fund vital drugs that could prolong her life.
Inaaya Shabbir, the daughter of Amber Khan, from Accrington, is battling a rare genetic disorder which means she is unlikely to live past early childhood without access to costly medication.
In January, 15-week-old Inaaya was diagnosed with Wolman’s Disease, meaning she was born without the enzyme to break down fats, leading to severe malnutrition.
Her family are now desperately trying to raise £500,000 to fund the expensive drug sebelipase alfa, which replaces the missing enzyme – and could keep her alive.
The National Institute Of Clinical Excellence (NICE) last month ruled it did not recommend NHS funding for the drug, which means Inaaya’s treatment could be withdrawn.
Former St Oswald’s primary and Mount Carmel high school pupil Amber moved from Ormerod Street to Sheldon in Birmingham six years ago, where she now lives with Inaaya’s father, Ibrar Shabbir, 22, and their two-year-old son Ibrahim.
Amber, 20, said her daughter deserves much better. She said: “How can they play with a baby’s life like this? If I hadn’t taken her to hospital that day when she had a temperature she wouldn’t be here now. She’s so happy and smiling, but she doesn’t know what she’s going through. She doesn’t deserve this, and I don’t know how they can decide to take her chance at life away.”
If the treatment – currently being delivered to Inaaya from a pharmaceutical company and administered at Birmingham Children’s Hospital – were to be continued Inaaya is predicted to grow and develop normally.
Her family are now appealing the decision by NICE and a final ruling will be announced within the next six months.
Inaaya’s grandmother, former Express Gifts worker Nicola Conroy, said the situation was ‘inhumane’. She said: “At the moment her life hangs in the balance of this treatment – without it she won’t be here. I’d do anything. I’d give my life for her to be able to live.
Nicola, 43, added: “We can’t give up hope. She’s a happy baby, still full of smiles, and she’s cooing.
“That’s the hardest thing. We have to feed her through the tube in her chest but the majority of the time she’s like any normal baby. If love could cure her or best wishes could cure her, she’d be absolutely fine. We can’t give up on her.”
The NICE committee recognised that the drug is a ‘potentially life-saving treatment’ for babies, and said there is a ‘compelling clinical need’. But they concluded the cost was too ‘exceptionally high’ to be considered value for money.
A fundraising page by Accrington friend Vici Beardsworth has raised just under £10,000, and a sponsored midnight walk from Accrington to Blackburn is also planned in aid of the cause.
l To help with fundraising, visit justgiving.com and search Vici Beardsworth.