Helping Hands For Lilien Journey

Our little princess was born with a rare genetic disorder. Both of her eyes are underdeveloped and have Microphthalmia and therefore she is blind. She is able to sense light but nothing else. Unfortunately this gen problem caused her other serious conditions as well. She has Hydronephrosis in both her kidneys and duplex kidney on her left side. Beside these she is an always smiling, beautiful and curious baby.


Because of these issues we have numerous hospital appointments and she needs continuous special care. For her to learn and understand the world around us she will need a different environment. Unfortunately every time we MUST travel forth and back to London for appointments, treatments and further controls. This put us in a very difficult situation. Our financial capabilities started to reach its limit. At the moment we are not entitled to Disability Living Allowance as Lilien is not old enough, yet but the travel expenses are extremely high with only 1 person working in the family. Soon we will have to move to a bigger house, possibly with garden for Lilien to provide her the best place to experience the outside world from first hand.

In the last 6 months since she was born, we already have spent more than £3000 just on traveling and our savings are getting shorter and shorter. It seems like soon we will run out of it. We are looking for an option for me to be able to go back to work, however we cannot afford to pay for special care. At the moment because of her kidney problems there are high risks for infections. Also to ensure her eye sockets will not cause deformation on her head we have to use eye socket expander for years.  Therefore I have to stay home with her.

Please help us with this funding for our family so we will be able to provide her the everyday necessary care so she could live a complete life. We will be grateful for the rest of our life.
 


Kicsi hercegnőnk sajnos egy ritka genetikai betegséggel született, ennek következtében a szemei nem fejlődtek ki teljesen es egy úgy nevezett Microphtalmia - azaz kicsi szem - szindróma alakult ki.
Ez a génproblèma sajnos a veséit sem kímélte. A bal oldalon sajnos duplex, azaz kettő vesefejlődött ki, a jobb oldali vese pedig sokkal nagyobb, mint lennie kellene. Ezen felül reflux alakult ki, ami miatt rendszeresen fertőzeseket kap a kis szervezete, mivel saját magát mérgezi azáltal, hogy nem tudnak a méreganyagok teljes mértékben távozni a szervezetéből.
Jelenleg Lilien kora miatt fogyatékossági támogatásra nem vagyunk jogosultak, és sajnos a megtakarítasaink véglegesek.
A rengeteg kórházi időpontok, kezelések miatt nagyon sokat kell utaznunk Londonba oda-vissza és ennek finanszirozása nagyon megterhelő.
Ezen felül Liliennek a legjobb lenne ha egy olyan környzetben nőne fel, ahol számára a legbiztonságosabban tanulhatja es ismerheti meg a külvilágot.
Ebben szeretnénk a segítségeteket/segítségüket kérni.
Kérlek, támogassátok Lilient!