Shilbottle mum dismayed by council decision on school transport for daughter with life-limiting illness

Three-year-old Nala Shaw has metachromatic leukodystrophy (MLD), a genetic disorder which causes fatal damage to the nervous system and organs.

Her younger sister, Teddi, hit the headlines earlier this year when she became the first child in the UK to receive life-saving gene therapy.

While Nala’s condition continues to deteriorate, she is now attending The Grove Special School in Berwick three days a week.

But mum Ally and dad Jake are having to make a 70-mile round trip because their application for school transport has been turned down by Northumberland County Council.

"It took a long time to get Nala into a school that meets her needs so we were delighted when The Grove found a place for her,” said Ally.

“We applied to get school transport but were turned down. The first time I was told that, as her carer, it was my responsibility and when we appealed we were told that it was because she is under four.

“It’s just ridiculous,” she said. “Nala’s circumstances are very different and her life is going to be extremely limited.

"I fully believe the council’s guidelines are unfair and outdated. It seems to be that one rule applies for all but every person’s case is completely different.

"It’s not just our position either,” she added. “I’m trying to stand up for special needs families out there.

Nala won’t be four until August which leaves the family facing the prospect of forking out hundreds of pounds in fuel, not to mention the time it takes out of their day.

“I’m now making a 90-minute round-trip to drop Nala off and then doing the same thing again later the same day to pick her up,” said Ally.

"Teddi also has a compromised immune system and I’m having to take her back and forward with me,” she added.

"I get £270 a month to be Nala’s full-time carer but the disability van we have goes through the fuel and with the cost of living as it is it all adds up.”

"We wanted Nala to be able to go to school and The Grove is brilliant but we also hoped it would give us a better quality of life. We hoped it would give us a little break from caring for her. Our world revolves around Nala but Teddi’s only one and she needs us too.

"The A1 isn’t a good road anyway and we’ll often find ourselves stuck behind farm vehicles,” she continued. “By the time we get up to Berwick and back, we only have a short time before it’s time to go back.”

The Grove is one of only two schools in Northumberland able to cater for Nala’s complex needs, the other being in Ashington.

"Unfortunately there’s nothing closer to us,” said Ally.

Nala’s condition is too advanced for her to get the same treatment as her sister. She has good days and bad days but is now non-verbal. Life expectancy for most MLD cases ranges between just five and eight years.

Teddi had her stem cells removed and the faulty genes replaced at the Royal Manchester Children's Hospital and is now doing well.

Northumberland County Council provides free home to school transport to 8,000 children and young people who are eligible under its Home to School Travel and Transport policy at an annual cost of £18m.

Audrey Kingham, the council’s director of children's services, said: "Unfortunately, Nala doesn't yet qualify for travel support as she is still to reach compulsory school age.

“The council's published home to school travel and transport policy, which can be found on our school transport webpage, does make clear that children attending a nursery class in a school or a Private Voluntary or Independent (PVI) setting are not entitled to transport assistance, irrespective of the distance from home.

“It therefore remains the responsibility of the parent/carer to transport their children between home and the early years setting. This reflects statutory guidance which Northumberland County Council adheres to, as do other local authorities.

“As Nala will have reached compulsory school age in time for the start of the new academic year in September, she will therefore qualify for assistance with school transport.”