A determined Biggleswade family is hoping the community can give them a “huge ray of hope” and help raise £60,000 for treatment to enable their little girl to eat food again.
Elena Godinho Gale, aged six, has to be fed milk formulas via a tube to her stomach, because when she was just one year old she became very poorly with acid reflux.
Beginning to associate food with pain, Elena became afraid of eating, and despite the best efforts of her family and medical professionals, the only option was for Elena to have a portal inserted into her stomach so she could be given nutrients to survive.
However, the family is hoping they have found the answer to their prayers, as a program in Atlanta, USA, has accepted Elena on to an eight-week intensive eating programme. The only problem being the £60,000 cost.
Elena’s mum, Sofia, 43, said: “Elena stopped eating completely by the age of 18 months. We tried different spoons, different types of food, different places. She would look at food and get so upset that she would have to leave the room, feeling ill.
“We tried specialists and private help, but it was no good. She needed more than the odd hour.
“We ended up in hospital the week after her first birthday. They gave her milk and monitored her, but she kept bringing it back up. That was when she had the operation so she could have a feeding tube.”
The NHS has been an “amazing support” and provides the family with Elena’s forumulas, and Sofia hopes that one day there can be free, intensive treatment for children with eating troubles.
She added: “The American program means so much to us because at the moment we don’t really have a family life that resembles what other people can do.
“We can’t go to a restaurant, we can’t go outside without carrying a pump with us to transfer the milk. Everything is so much more laboured.”
After her operation, Elena was also diagnosed with Williams Syndrome, a rare congenital disorder. It is non-hereditary and can cause people to have mild to moderate learning difficulties and physical disabilities, such as hypermobility and low muscle tone.
It is also linked to acid reflux.
Because Williams Syndrome means that Elena can become anxious in new situations, Sofia has made Elena aware that help is on the horizon, asking ‘Would you like to eat like Mummy, Daddy and your sister?’
Sofia said: “I have got so much hope – where there’s a will there’s a way.
“I can’t see her struggle all her life, not knowing if I could have done something.”
Elena will have to be retrained to eat, first with baby food, then textured food, and then finger food.
Sofia added: “Elena is a really brave little girl, she really is. I admire her because she has been a fighter all her life.
“She’s really friendly, really loving, very social - that’s one of the traits of children with Williams Syndrome. She would love to eat round the table with us again.”
Determined to help, Elena’s family and friends have been organising a number of challenges. Elena’s Dad, James Gale, 42, is taking on a swimathon, while Sofia, with the help of a few friends, will be fasting for a day, followed by a five-day liquid diet to reflect what happened to Elena.
Meanwhile, friend Phil Wallis will run next year’s London Marathon for Elena, and the staff at Jordans and Ryvita, in Market Garden Road, will hold a bake sale.
However, Elena’s biggest supporter is big sister Isabel, aged eight.
Sofia said: “Isabel would love to see Elena eat again.
“In the next three months, she will be running five park runs, representing each year Elena has not eaten, starting with one in Wimpole on Sunday. Isabel is so caring; siblings of children with special needs often are.
“She is incredible as a sister and a daughter.”
All money donated will be going through a charity called the Tree of Hope, which needs an estimated £60,000 to pay for Elena’s treatment.
The charity supports families who have a child or young person with a disability or illness and any extra money raised will go towards its other projects.
To donate and help Elena receive the treatment she needs to eat again, visit www.treeofhope.org.uk/elena-godhino/