This is Kevin. He is seven-years-old and just wants to go to school.
But because funding for his signing teacher was pulled, Kevin, who has a significant hearing impairment, can no longer attend Morecambe Bay School.
He suffers from CHARGE syndrome, a rare genetic disorder that affects many areas of the body, and has a tracheotomy tube inserted into his throat, so cannot speak.
His dad Kevin said: “They are taking him out of paradise and putting him in hell.
“Since the October half-term, Kevin has not been in school.
“There are two special needs kids in the school (including Kevin) and they had a signing teacher each.
“The school just said they had run out of funding for a teacher.
“There was no exit strategy for him leaving, no paperwork for the plan for his future.
“Two weeks on and he is still out of school and there has been no home schooling either.
“He needs a mainstream education and to be with other children his own age.
“All the schools that can meet his needs are full or they haven’t got the expertise to deal with him.
“There are so many kids that are isolated and pigeonholed and we know he is thriving and we want him to thrive.
“We just feel so let down. It’s shocking.”
Kevin, 56, and his partner and mum of Kevin, Amanda Thorp, 39, now have to care for him with very little respite and have been told they can appeal against the decision to exclude him from school next March.
Dad Kevin said: “It’s illegal to take a child out of school.
“Kevin is unique in this area and there is no expertise about his condition locally.
“Alder Hey have expressed their concerns about the lack of support in the area.
“He is remarkable and amazing. Routine is important and you have got to have a gradual transition.
“He has a fundamental human right to an education.”
Kevin’s mum Amanda said: “We are fighting all the time for Kevin.”
Since he was born, Kevin has spent nearly two and half years in Alder Hey Children’s Hospital and has endured 28 operations, including heart surgery.
He will require more surgery in the future.
Mike Hart, Lancashire County Council’s director with responsibility for special educational needs, said: “We do not comment on individual children’s cases as we have a duty of confidentiality towards them.
“However, when our educational psychologists assess children’s needs, our duty is then to identify a school which can meet those needs in line with the code of practice, and provide them with the best all-round education we can offer.
“Children’s needs sometimes change, so we review their progress regularly and a change of school may be recommended.
“Ideally such a transition would happen without delay, but if a child was out of school for any significant period of time, every effort would be made to provide a suitable programme of support until admission to the new school was confirmed.”
A spokesman from deafblind charity Sense, said “Local authorities have a legal duty to provide all children with complex disabilities with an education that meets their needs.
“This includes a duty to make reasonable adjustments, such as providing one to one communication support.
“School can be challenging for children with complex needs and it is vital that local authorities provide them with the support they need.”
CHARGE syndrome is a disorder that affects many areas of the body.
CHARGE stands for coloboma, heart defect, atresia choanae (also known as choanal atresia), retarded growth and development, genital abnormality, and ear abnormality.
The diagnosis of CHARGE syndrome is based on a combination of major and minor characteristics.
CHARGE syndrome occurs in approximately 1 in 8,500 to 10,000 individuals.