THE mum of a terminally ill tot has issued a desperate plea to Matt Hancock: “Please don’t forget about us.”
Afroz Shehzad, 37, from Stoke-on-Trent, is full time carer to her four-year-old daughter Amirah – one of an estimated eight children in the UK with genetic Krabbe’s Disease.
Afroz and husband Naveed, 42, are now desperate for the health secretary to work with US companies who are starting clinical trials this year.
Afroz said: “We’ve seen scientists create a new vaccine for a new disease in less than a year.
“I’m now convinced there must be a cure for my daughter out there which the Government needs to help find.
“There are trials in the USA which have been approved which is promising.
“Surely we can work with these companies or even fund our own research into curing Krabbe’s?”
There is no known cure for Krabbe’s which causes mental and motor deterioration.
No known cure
Most Krabbe’s sufferers will not live past their second birthday.
Afroz, 37, said: “It’s a horrible disease. She’s been through hell with cardiograms, viruses and infections but she keeps fighting them.
“She’s a tough cookie and I want to do something for her.
“There has to be something they are giving to other children that could keep her going for a while.”
Amirah is one of an estimated eight children in the UK with rare genetic disease Krabbe’s which affects nerves and muscles.
Afroz said: “Now they are saying the bone marrow transplant is too late for her – but there must be something out there to keep her going.
“I don’t want to waste any more time.
“I know she’ll never jump or dance – I just want something that will stop this disease from getting worse.”
Defying the odds
Amirah was diagnosed with Krabbe’s at six months and was told she would not live past 15 months.
But despite suffering from repeated infections and two cardiac arrests in 2019 when she was treated in her home town of Leicester.
Doctors at Leicester’s Hospitals broke the news to parents Afroz and Naveed, 42, that they would not attempt to resuscitate Amirah if she went into cardiac arrest.
The case went to the High Court last year to stop doctors who refused to treat her but was adjourned when Amirah was accepted for care by Royal Stoke University Hospital.
The family of nine moved to the new city two hours away where mum Afroz is a full time carer and dad Naveed works part-time for the Royal Mail.
Afroz said: “Stoke Hospital were so welcoming to her – they kept her in an extra week to get to know her.
“The doctors are helping – they are trying the best they can.”
Her case echoed five-year-old Tafida Raqeeb’s historic court judgement against doctors who refused to treat her.
Tafida – who suffers from rare condition arteriovenous malformation – was flown to Genoa in Italy for treatment and last year left intensive care.
WHAT IS KRABBE’S DISEASE?
KRABBE’S disease is an inherited neurological condition in the brain, according to charity Krabbe’s UK.
Most patients will develop the disease shortly after birth but symptoms can appear in older children or adults.
Children may not show symptoms at birth but soon develop signs of neurological damage.
Some of the symptoms that may occur include:
- Feeding difficulties
- Stiffness of limbs
- Clenched fists
- Fever & seizures
There is progressive mental and motor deterioration, sometimes leading to deafness and blindness
Life expectancy of children with early infantile Krabbe disease is approximately two years.
*TO donate to Krabbe’s UK, visit https://www.justgiving.com/krabbeuk
Extremely vulnerable Amirah tested positive for coronavirus – but fought off the disease.
Afroz said: “She was fine – she didn’t have to go to hospital.
“She got a temperature once or twice. She’s fought off worse.”
On the up
Now Amirah uses a bipap machine to help her breathe at night and may soon have an operation to put a feeding tube in her stomach.
Afroz said: “Now that she’s strong, the doctors will think about doing it but they can’t say when because of Covid.”
Bone marrow and umbilical cord transplants can prolong life in Krabbe’s sufferers.
But doctors have told little Amirah it is too late for her to benefit from the procedures.
Two American companies – Forge Biologics and Passage Bio – are exploring the possibility of gene therapy.
Afroz hopes the progress companies are making will help save little Amirah.
She said: “Something is better than nothing isn’t it?
“If that could help my daughter then why not?
“I’m struggling and I don’t want her to die because she’s my world.
“I want to help other parents as well – not just Amirah.
“I’d be so happy if we can get something to help other people and kids.”