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PRESS RELEASE: Children’s Foundation to help purchase special food mixtures for a severely ill little girl

11.05.2016

The Tartu University Children’s Foundation is supporting 1-year old Emily, who is suffering from a rare metabolic disease, and needs help purchasing special food mixtures and aids.

The little girl is diagnosed with a disease, that affects different organ systems, called Congenital defect of glycosylation type 1A. Due to the disease, the synthesis of vital proteins is disturbed. Because proteins are needed to perform most of the needed actions in a human body, deflections in them cause interferences in the work of many organs.

„Emily’s is suffering from one of the severest forms of the disease – she suffers from lag in weight and growth, interference in liver functions, loss of sight and hearing, delay in psychomotor development, liquid around her heart etc,” according to her attending physician, Tartu University Hospital’s medical geneticist dr Kairit Joost. Due to very low muscle tone, she doesn’t raise her head or sit on her own, she is very receptive to viruses and needs around the clock assistance in changing positions, feeding and hygiene operations. According to the physician, there is not a specific treatment for this congenital and rare disease , that’s why a so-called symptomatic treatment is applied. This means that medics help the little girl with problems they are able to manage.

Amongst other problems, since month three, Emily has been struggling with oral feeding, due to a strong pharyngeal reflex. Until she was 10 months old, she was fed through a nasopharyngeal probe, and after that she was fitted with a gastrostrome – a probe going through a hole in the belly, straight in to her stomach. To grow, Emily needs enough energy and nutrients, but can only recieve small amounts of food during around the clock feeding. Because commercial milk mixtures and purees do not contain enough nutrients in amounts of food acceptable by her, the doctors think the best thing for Emily, is a special food mixture, that will cover her daily needs of nutrients.

„The goal is to guarantee her the nutrients fit for her age, so she can grow and develop as well as her disease allows her to,” dr Joost explains. „ This will certainly affect the development of her brain, and also the operations of the heart and liver, but mainly helps to avoid any more damages.”

In addition to the expensive food mixture, the family also regularly has to purchase necessary feeding systems for the probe feeding, and rent a feeding pump. Using all of these, means that the family has monthly expenses of over 400 euros. That is a big burden for the family, and that’s why they turned to the Children’s Foundation for help. From April, the Foundation has been helping the family cover expenses for Emily’s food mixtures and aids with 322 euros each month, and that is a big help to the family.

The Support Application Manager of the Children’s Foundation Eveli Ilves points out, that among the receivers of support from the Children’s Foundation, there are already 13 children, that need special high-calorie food mixtures to grow and develop, little Emily is one of them. „For these children, the food mixtures are much more than their daily food, it is more like medical food, that helps to develop and also to improve their quality of life,” she stresses. „Without the support from the Children’s Foundation, these families would not be able to afford the expensive food mixtures for their children, because for an average family, a monthly expense of hundreds of euros is too much, and there is no national support for the problem at this point.”

If You too would like to give your part to support Emily and other children in need of special food mixtures, we invite you to take a part of the Duck Race, that this year raises money for children suffering from cancer, and also for children in need of special food mixtures. You can find more information and buy a duck number at www.pardiralli.ee

The Tartu University Hospital Children's Foundation is one of the oldest and largest national charity organisations, which celebrated its 15th anniversary in November. With help from donators, the foundation has supported the purchase of equipment for different hospitals, and hundreds of children and families in need of special care with nearly 3 million euros. It is possible to help sick children through the Children’s Foundation by being a permanent donator at http://lastefond.ee/to-donator/permanent-donation/.