Barrow family of 'little warrior' with Dandy-Walker Syndrome appeal for public's help

Barrow parents Rob Morgan and Sarah Forster were delivered the news at their 19-week scan that their unborn baby had Dandy-Walker Syndrome – a rare congenital brain malformation involving the cerebellum and the fluid-filled spaces around it.

Little is known about the condition, which affects just one in 10k children, and medics advised Rob and Sarah to opt for a termination.

Adamant on giving their baby girl a chance at life, the parents followed through with the pregnancy and welcomed baby Mia nearly two years ago.

However, at just 13 months old, Mia’s health took a turn for the worst in December while undergoing major surgery.

Mia Amor in hospital (Image: Newsquest)

During the operation Mia went into cardiac arrest and developed a number of complications including suffering up to 100 seizures a day, a hematoma and epilepsy.

Further surgery led to a stroke which affected the life side of Mia’s body.

READ MORE: Barrow parents told to abort baby with Dandy-Walker Syndrome praise 'little warrior

Mìa spent three months in hospital with her mum and dad in Newcastle. During this time, she regressed considerably and could no longer hold her head up, smile or talk.

After finally being discharged from hospital in February, Mia had to relearn everything again – and began intensive physio and DMI therapy to improve her quality of life.

Mia’s mum, Sarah Forster, said: “When we came home, Mia still wasn’t quite herself. She took quite a knock – she had to relearn everything. It was like she was a brand-new baby. She was having up to 100 seizures a day at one point.

“Mia didn’t smile for five months after coming out of hospital, she’s only just starting to come back to herself now.

“She couldn’t even hold her own head up. When she came home, she was fed by a tube. She’s now off the tube and doing a lot better.

“Mia started physio with the hospital but needed regular, specialised treatment which the NHS didn’t provide. We found someone who was providing this in Clitheroe and she’s been having sessions and has come on so much.  

“This type of therapy isn’t available on the NHS. With the NHS they weren’t regular weekly appointments and Mia needs intensive sessions to really make a difference.

“She now has her head control back and we’re working on sitting unassisted. We have seen a huge change in Mia since starting this specialised physio and DMI therapy. We’re so proud of how she’s come on since leaving the hospital.”

Mia Amor (Image: Newsquest)

However, the 75-mile round trip from Barrow to Clitheroe is starting to add up for the family who are forking out £1,000 a month on therapy, travel and accommodation.

Uncertain about how they will fund Mia’s vital therapy long-term, the family has launched a Just Giving page.

READ MORE: Barrow grandad heads to Government to raise awareness of Dandy Walker Syndrome

“Mia will require therapy for the rest of her life,” said Sarah.

“Our target of £25k will fund three years of physio and equipment for Mia. We have a chair stander provided to us by the NHS but they’re quite bulky, we can’t really take it out of the home.

“A charity has provided us with tubs for people to drop any donations at places like BAE, cafes and salons in the town which will hopefully boost the funds.

“This money will help give Mia a better life and some sort of independence. We’ve already seen her quality of life improve so much since starting physio, we want that to continue.

“If people just donate £5 or whatever they can, it means the world to us. The support has been so overwhelming for Mia.

“We have to adapt to our new lives with Mia but she makes it so worth it.”

To make a donation, visit: www.justgiving.com/campaign/physioandequipmentformiaamor