A mum has claimed her son is being "left behind" because of his life-limiting condition.
Kara Dobbs, 29, from Birkenhead, was only 20 when she first suspected something might be wrong with her newborn son, Leo, who was suffering from bouts of vomiting. At seven months, Leo was diagnosed with Infantile Pompe disease - a condition affecting only 25-30 children in the UK - which means sugars harmfully enlarge his vital organs.
It is a progressive condition that causes muscle weakness, lack of reflexes, difficulties breathing and swallowing and an enlarged tongue, liver and heart. Despite the complications and short life expectancy that comes with having Infantile Pompe, Kara has been tirelessly trying to make every day with Leo, now eight, count and not let his condition get in the way of him "living his life".
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However, Kara has claimed her son is now being "denied" an education because he is not being provided with suitable transport to get to school. She told the ECHO : “Leo's been using Wirral Council transport services for years.
"Last year, his health started to decline quite seriously but when he started to stabilise he was given half-days at school to try and get him back into education and see if he’d cope with it. He was doing from 10am until 2pm and handling it fine so the doctor said he should go back to school fully because Leo’s education is very important to him and he gets a lot out of it.
“The doctors and nurses came to an agreement with the transport service and had meetings in February this year about moving Leo back to normal school hours. The transport service said they couldn’t sort it out until September so we came to an agreement we’d wait until then for it to be sorted."
Despite agreeing to wait until September for Leo's transport to be sorted, Kara feels her son has been "fobbed off" by being put in a taxi that doesn't cater to his needs as a ventilated wheelchair user, rather than a bus. Kara said: “He’s not being able to get into school until this is sorted so it's impacting his education now and his mental health is going to be affected by that.
"The transport service has known about this since February and they’ve had the whole summer holidays to arrange everything. I’ve been calling and emailing every day but nothing has being heard.
"It’s heartbreaking and disheartening because these children have the right to an education and the council isn't facilitating that. It feels like he’s being denied that.
Kara has also claimed that, when Leo has been taken to school in a taxi, he has been put at risk by not being strapped in properly. She said: "They don’t care for the safety of children because the taxi driver they assigned him to didn’t even strap the wheelchair in properly.
"They only strapped the front of the wheelchair in when they need to be at the back and the front. He’s complicated, he’s on a ventilator and he needs full support. At the end of the day, its Leo that’s suffering because it means he’s not getting his education.
A council spokesperson said: “Wirral Council has a statutory duty to provide home to school transport to more than 1,200 young people every day. There is currently a recognised shortage of providers of this kind of specialist transport - a situation which has been compounded by the impact of the Covid-19 pandemic.
“Because of this we have had to look at alternative options, which includes the use of private taxis. Every company and driver contracted to provide home-to-school transport in Wirral has, however, received training and been fully risk-assessed, so if there is a suggestion that a provider is not operating safely, this is something that will be investigated."
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