Toddler from Havant who has spina bifida is going attempt her longest-ever walk for charity

Terry Groves, 37, and his partner, Carrie, were told, at the five-month scan in 2020, that their baby had spina bifida, which could potentially reduce her quality of life significantly.

After a long hard think about what they should do, with termination a possibility, the couple, from Havant, decided that they were determined to give their baby the best chance at life and continue with the pregnancy.

Terry, who works for a refurbishment company, said: ‘From the get-go that was not an option.’

Spina bifida is a condition when a baby’s spine and spinal cord do not develop fully in the womb resulting in a gap in the spine. The severity of the condition varies and can cause problems with movement, bowel and bladder control, as well as excess fluid on the brain.

At six months gestation, Carrie underwent an operation to repair Esme’s spine whilst she was still in the womb and it is believed that Esme was the ninth person that this procedure had ever been on at this stage.

It came with great risk but Carrie was determined to try it to give her baby a fighting chance and with the help of Dr Emma Bredaki and Professor Jan Deprest ‘fighting’ their corner, the operation was completed and thought to have significantly increased Esme’s quality of life.

Esme, who is now nearly two, is full of love and joy, and is growing in strength daily. Although she faces challenges different to other children, such as having to be catheterised daily, for her this is a normal routine which does not have any negative impact on her happy life.

She has recently started walking with a walker and is gaining strength and confidence daily, and Terry said that she is ‘loving it’ because it gives her a new ‘lease of life.’

Carrie said: ‘We’re all so proud of the little person Esme is growing into and how far she has come. Even at such a young age, she has such determination and a genuine happiness and zest for life with her singing and dancing.

‘She was worth all the tears and more. She amazes us every day and our family wouldn’t have been complete without her.’

The family adore Esme and support her continuously through everything, and Terry said that her older siblings are ‘brilliant with her’. He also paid homage to his wife, who he called a ‘hero’ for making the frightening decision to have the operation and to fight for their family.

The two year old is going to be attempting to complete a mile-long walk from South Parade to Clarence Pier for Spina Bifida on August 13 to raise awareness for her condition.

Terry added: ‘She might not do the mile but it is just a token. It is symbolic of where she has come from.’

Her parents have set up a GoFundMe Page for people to donate and their target of £500 has been exceeded with them already raising £950 so far.