EIGHT-year-old Alyssa-Mae England is thought to be the only girl in the world suffering with her rare chromosome disorder.
Her condition is so unknown that it does not have a name and she is part of the rare chromosome register called Unique.
We are just having to take each day as it comes.Zoe England
Now her parents Zoe and Colin, from Fratton, are fundraising for a trike which will change Alyssa’s life and enable her to act like a normal child.
Alyssa, who attends the Mary Rose School, suffers from unbalanced translocation which means some of her chromosomes have swapped but unequally. In Alyssa’s case, she is missing one of her chromosomes.
The genetic condition has brought on other health problems for Alyssa, who also has congenital heart disease, epilepsy and multiple urine infections.
Mum Zoe, 35, said: ‘As far as we know, she is the only girl who has all the conditions she does.
‘There are two other children with the same genetic disorder, but it doesn’t affect them like it does Alyssa.
‘It has been hard because doctors don’t know how best to treat it all and we are just having to take each day as it comes.’
Alyssa has been in and out of hospital and last May had to be put in an induced coma following suspected sepsis. She spent six weeks at Southampton General Hospital.
She was most recently admitted to have a gastrostomy tube fitted to help with her feeding.
The family want to raise at least £2,000 for a custom-made adapted tricycle which Alyssa can be strapped into. It will have a handle for people to control so she can ride along safely.
Zoe added: ‘Alyssa loves running and playing outside with her sisters but she has little safety awareness.
‘She cannot ride a normal bike as she would end up in the road.
‘We just want her to have a normal family life and to be able to do the other things little girls do.’
To help the family, the Jamesons Arms, on Church Road in Fratton, is holding a fundraiser.
Tomorrow, at 3pm, there will be karaoke, refreshments, a raffle and music through the ages.
It is for adults only due to the size of the pub.
Other people wanting to donate can visit gofundme.com/37q5jb4.
Zoe added: ‘We have been overwhelmed with the support from people.
‘Lots of people have stepped in with raffle prizes and fundraising ideas.
‘This city is so supportive when it comes to helping out others.’