Helston boy's 30-day fundraising walk for hospice
- Published
A 10-year-old boy with complex care needs is walking for 30 days to raise money for a hospice that is helping to look after him.
Freddie, from Helston in Cornwall, spent six months in hospital in 2020 where he had a feeding tube placed into his heart.
In December he was discharged to Children's Hospice South West, which has helped care for him since.
Freddie has completed 21 days of his challenge and raised more than £1,200.
He has been using an adapted frame to help him move around and take part in the 30-day walk.
"It takes a lot out of him but he is very determined," his mum Hayley said.
"Sometimes it's hard to get him out of it [walking frame], I know his limits but he would like to stay in and keep going, he's very bossy of where he wants to go."
Freddie has severe global developmental delays, external which means he cannot walk unaided or talk.
It was only after he was born that doctors noticed his health problems.
"The doctors have never been able to identify what's wrong with him; there's no name for the syndrome he has," Hayley said.
In 2020, Freddie spent six months at Bristol Children's Hospital in the high dependency unit.
He had intestinal failure after the organ's muscles stopped working and as a result surgeons removed his large intestine.
Hayley said: "He has feeding problems, he has respiratory support overnight for his breathing. He is now fed into his heart instead of his gut.
"It's a lot of care. His bladder also stopped working and he also suffers with pancreatitis, he had about three bouts in six months.
"We didn't know if we could bring him home or if we would need to put him on palliative care but we brought him home in December and he has thrived since then."
Freddie was discharged to Children's Hospice South West where the family learnt about the new heart feeding tube and process, called a total parenteral nutrition. , external
Since December he has been spending time at his family home and at the hospice.
In May, Freddie walked more than six miles (9.6km) in the first three weeks and is due to finish his challenge on Tuesday.
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