THE MOTHER of a child with serious health issues believes that her son could die on his way to school if problems with his transport do not change.

William Howard, 8, almost died in October 2021 after contracting a rare terminal form of mitochondrial disease DNM1L that left him needing extensive ongoing care and medication within four minutes of having a seizure or he could die.

Read More: Family’s fight after boy diagnosed with ultra-rare condition

The young boy, who is now registered blind and reliant on a wheelchair for movement, recently started at Brimble Hill special educational needs school and relies on the Swindon Borough Council-provided Akcess shuttle bus to get to and from the Blunsdon setting. 

But his parents, Mihaela and Simon have expressed their concerns after finding out that William, who has a letter from a doctor advising he should not be travelling longer than 15 minutes, was on the bus for up to an hour to and from school. 

They were also shocked to discover that no one on board the bus, either the driver or a carer who rides with the vulnerable children, was sufficiently first-aid trained to be able to recognise a seizure or administer William's much-needed seizure medication and that all they could do was call 999.

Mihaela, who has been William's full-time carer since he developed the condition, said: "As a mum I am in distress, anxious and having panic attacks every morning.

"I am praying that our son gets to school without having a seizure on the minibus as there is no one on the bus who can help him and he can die.

"I am crying almost every day and have trouble sleeping due to this, He is going to have a seizure and die on that bus and no one seems to be able to do anything about it."

Swindon Borough Council's travel team offered the family 45p per mile in funds towards a taxi, but the Howards said they would struggle to find a taxi that could accommodate his dedicated wheelchair and said they could not afford it.

They contacted their local councillor Matthew Vallender as well as North Swindon MP Justin Tomlinson for help after being told by the council travel team, the Akcess Bus team and the school that nothing further could be done. 

After The Adver contacted the council for comment, William's bus journey was amended to make it shorter. 

Swindon Advertiser: The Howard familyThe Howard family But he is still travelling without someone who can give him the urgent buccal midazolam medicine he needs to get him out of a seizure if one starts. 

A Swindon Borough Council spokesman said: “We completely understand parents’ anxiety around school transport when their child has medical needs. In such cases, we work with our health colleagues to find suitable solutions, which may include shorter travel routes.

“All our minibus drivers have the recognised national MiDAS (Minibus Driver Awareness Scheme) training and our passenger assistants are trained in first aid.

"Our staff are not able to provide emergency lifesaving interventions, as only clinically trained professionals are able to provide this.

“In the event of an emergency, our travel crews will always call 999 for urgent medical assistance and keep all other passengers safe.”

But the Howards say that calling 999 and waiting for an ambulance will be too late for William. 

"The ambulance will not arrive in time to save his life, or the life of the other high-risk children who need emergency medicine," Simon said.

"We raise these concerns not just for our son, but for many of these children in the same or similar situation."

A spokesperson for Akcess said it was a Swindon Borough Council matter.