Our Little Girl Who Stopped Eating

Many families can sit around the table for dinner. This isn’t a reality for us because Elena does not eat.

For those of you who do not know our friendly energetic little girl, here is her story in brief and a quest from her loving family to see her free from her feeding tube.

Almost 7 years ago we welcomed our little girl into the world, seemingly healthy we had no idea of the battle which lay ahead. By the age of 1, she started to get very poorly with severe reflux and eating became a real struggle. She began associating food with pain. Despite all our efforts Elena refused to eat and her weight began to plummet. It was soon apparent that our only option was for Elena to have an operation to have a tube inserted into her stomach to deliver the necessary nutrients in order to survive. She stopped eating completely by the age of 18 months. As the time went by and her reflux subsided it became clear that Elena was terrified of eating, associating food with the pain she had been through.

We have since found out she has Williams syndrome. Williams Syndrome, is a very rare genetic condition with a varied range of complex needs. Although this was a very difficult time for our family, we never imagined Elena would get to the age of 6, and still be dependent on her feeding tube. Tube feeding has a huge impact on daily life. Elena has 5 (1hour) tube feeds per day which entails her being hooked up to a machine – Not much fun for a 6 year old who just wants to play.

Having tried numerous therapists and approaches throughout the years, nothing has ever worked for our girl. However, we have now found a big ray of hope in the form of an intensive feeding program in Atlanta, U.S.A. It is an extremely intensive program which lasts 8 weeks and has successfully treated children with the same condition as Elena. Unfortunately this comes with a hefty price tag due to the amount of expertise, therapies, time and work that is required for Elena to overcome her fear of eating, and learn how to swallow again.

Elena will face lots of challenges throughout her life. To see her free  from her tube and enjoying the pleasure of food would mean so much it is impossible to put into words. It is one of those things most of us take for granted yet would change our families lives beyond measure.

Any donation you may give will be so grateful appreciated. And remember, if you are a UK tax payer, to tick the box for gift aid as for every pound donated, gift aid will add an extra 25p to your donation (it will not cost you any extra). Thank you for reading Elena’s story.

Sofia, James and Isabel (Elena’s Family) xx

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

 If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects.  If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.

 


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