Louise Pape and Mark Thompson were fearful that their first child Louis would not make his first birthday after he was born with a series of rare medical conditions.
But when he reached the milestone as a happy and funny little boy, they wanted to do something special to mark the occasion.
Instead of gifts, they asked friends, family and colleagues to donate to Smile Train.
Louis was born in June 2015 with a series of rare medical conditions including a complete bilateral cleft lip and palate, and TOF/OA, which means he’s unable to swallow. He’s also moderately deaf and needs the assistance of hearing aids.
Louis’ parents were informed by experts that this combination is extremely rare, with only six births of this kind recorded in the last 25 years, and sadly, only three of those surviving past their first birthdays - with Louis being one of them.
Louis had to undergo his first serious operation when he was just 20 hours old, and now receives all his care at Addenbrooke’s Hospital - which is a 160 mile round trip from his family home in Bourne.
Louis has so far had 12 operations, with another three scheduled to date.
But Louise and Mark, a teacher at Catmose College in Oakham, were so grateful that their son had reached his first birthday and felt compelled to help others with similar problems.
After researching charities which support those with cleft, they became aware of Smile Train - an international children’s charity which provides 100 per cent free cleft lip and palate repair surgery for children across the developing world.
In many parts of the third world, children born with cleft suffer enormously due to a lack of medical resources and lack of understanding about the condition. It is not uncommon for children to be shunned/rejected by their families and communities, denied access to education, and in extreme cases, even murdered.
In addition to this, children can also suffer from a range of serious medical problems - including experiencing difficulty when trying to eat and breathe.
Keen to raise awareness of the condition, which is often dismissed as a predominately cosmetic issue in the UK, Louise and Mark decided to ask their families, friends and colleagues to make a donation to Smile Train.
They raised £825 for the charity which will help pay for over five cleft repair surgeries.
Louise said: “Louis is a remarkable little boy - he’s been through so much but he’s still so happy. He brings a smile to everyone he meets.
“As a family, our attitude is that Louis mustn’t let anything hold him back.”
She said the family had received so much support from both medical staff at Addenbrooke’s and Peterborough City Hospital, as well as family and friends.
The family marked Louis’ birthday with a party and the lucky youngster didn’t miss out on gifts. His parents treated him to an outdoor play set, while he also received a new bike and building blocks, which he loves.
Louise added: “He loves waving to everyone in Bourne on his bike and he had a lovely birthday. Everyone was so generous. He’s been through so much already but we’ve had incredible support.”
Hannah Weston, from Smile Train, said: “Louis is clearly an incredible little boy and has an amazing family supporting him. It’s fantastic that so many family members, friends, and colleagues have made generous contributions for Louis’ first birthday so that children experiencing similar problems across the globe can gain access to some of the same treatment options open to children in the UK.”