Freddie Oliver, two, from Durrington, was born with skeletal dysplasia, which means that his bones are underdeveloped. He also can’t swallow food, has a small hole in his heart and poor eyesight and hearing.
Because of this, Freddie cannot support his own body weight, walk, talk or eat, and has to be fed milk via a tube and a button into his stomach.
So far doctors have been unable to find the root of his illnesses, and have told his mother Sophia Wilton that he could be the only child in the world with his condition.
Sophia, 29, said: “People say having a diagnosis doesn’t change anything but for me it would as I don’t know what kind of future Freddie has.”
After trying for six years to have a baby, Sophia finally fell pregnant with Freddie – but was told at 16 weeks that he had skeletal dysplasia. She said: “At one point the doctors advised me to terminate the pregnancy. They didn’t think Freddie would be able to survive outside the womb.
“I felt devastated – I waited so long to fall pregnant and to finally have a little baby growing inside me and be told that was so hard.”
Sophia decided to wait two weeks to see if his chest bones would develop more, which they did, and after a difficult pregnancy Freddie was delivered one month prematurely by caesarean section at St George’s Hospital in Tooting.
Due to his body shape, Freddie needs tailor-made equipment which Sophia has been unable to get solely through NHS funding.
So his aunt Josie Wilton started fundraising for him, including organising a walk from Brighton’s i360 to Worthing Pier. She has raised more than £1,800 so far.
Sophia said: “I felt so overwhelmed. We’re all busy, and these people took time out of their lives to do something for my little boy.
“I’m extremely grateful to my sister Josie for organising these events to raise money for Freddie. I feel blessed to have such a lovely sister and caring auntie.”
Money raised will go towards a specially-designed buggy for Freddie, a trike and a cot.
Josie is also organising a Christmas disco to raise more funds, which will take place on December 17 at Heene Community Centre.
To donate, click here.
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