Brave Theo (four) is inspiration for caring Pendle family to raise £5,000 for 'invaluable' charity
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But this brave little boy has undergone 28 operations and spent several months in hospital.
Theo spent the first nine months of his life in the Neo Natal Intensive Care Unit (NICU) at the Royal Manchester Children's Hospital after he arrived in the world at 27 weeks with a raft of medical problems, including cerebral palsy and fluid on the brain known as hydrocephalus. He has to have oxygen permanently and only has one functioning kidney.
Theo is also confined to a wheelchair and doctors have warned it is unlikely he will ever be strong enough to walk on his own.
While Theo was being treated by the dedicated staff, his mum and dad, Scott and Louise McDermott, were able to be close by, spending several nights in accommodation run by the charity Ronald McDonald House.
Theo finally went home properly for the first time in November last year, just in time for his fourth birthday and Christmas with his big sister, Isabel who is six and the family's new arrival, four month old Violet.
Now, the Colne family are spearheading a fund raising campaign to say 'thank you' to the charity for the fantastic support over the years. And so far they have raised just over £3,000 towards their £5,000 target.
Louise (28) said: "The Ronald McDonald house allowed us to be at our son's bedside day or night during critcal times.
"Before we had Theo we had never heard of this charity but what it provides for families is just invaluable.
"Along with the accommodation it provides family activities, peer support and gifts for occasions such as Christmas, Easter and Mother's Day.
"We wanted to raise some awareness of this fantastic charity and how much they help families like ours.
"Staff at the hospital saved our son's life, they are so dedicated, and this charity helped us to be there whenever we were needed."
The community of Pendle, and the wider area, has thrown its support behind the fund raising with donations of 133 prizes for a grand raffle and last weekend two fundraising events took place.
Morrison's store in Nelson supported an Easter egg tombola, lucky dip, cake sale and 'guess how many balloons in the car' fun quiz and Popa G's sandwich van, based on the B and Q car park in Nelson, made a superb gesture to the fund by donating a days wages of £150 and also 50p from every sandwich sold went to the cause. Staff also held a mini cake sale.
Staff and pupils at Lord Street Primary School are also supporting the cause by donating Easter eggs and craft sets to the raffle. Isabel, who is a pupil there, has impressed her classmates and teachers with her knowledge of Theo's illness and how caring and protective she is of him.
Louise said: "This all she has known since the age of two but she is such a caring and compassionate little girl, we are very proud of how she has dealt with her little brother being so poorly."
Now a full time carer for Theo, Louise previously worked at Asda and is also a former florist.
Louise and Scott (36), who is a valeter, have been touched by the support and help from the community.
Louise said: "People have been absolutely amazing in their support and help with donations.
"We are planning a sponsored car wash and will carry on with the raffles to get to our target."
And in September a new chapter begins for Theo as he has been accepted to start at Pendle View Primary School.
Louise said:"It is exciting but I feel quite nervous about Theo going as he has always been with me.
" But it will be lovely for him to start school and make some friends and have fun."
To make a donation to the family's fundraising please click HERE