Having a healthy child is the biggest blessing

Hi my name is Katarina and I am fundraising for my best friend Andrea and her daughter Liana. I am trying to help them by organizing events but they need much more than that. So please, help if you can. This is their story.....

"My name is Andrea, I'm 40 years old. When I think about it, my carousel of doctors was almost from birth. Such bigger problems as headaches, fatigue, getting stuck in the sides started in primary school, but everyone attributed it to the fact that I was a "finch". when I didn't know how to run on physical, climb the hill home without a break and out of breath.

When I was 14 years old, from minute to minute I stopped seeing in my right eye, hospitalizations, examinations, suspicion of multiple sclerosis. Every year my brain lesions increased, but my symptoms were atypical of MS. I still had muscle weakness, my parents carried me to the hospital in their arms, because my body was like a rag and I couldn't control it. The disease started 8 months after the birth of my daughter, my body was twitching and twitching, it looked like a Parkinsonian attack (myoclonic twitches), then everything from the waist down was aching. Again, cerebrospinal fluid, which showed nothing, neurological examinations, where it turned out that my muscles are not atrophying, but disappearing.

I started to worry about my daughter when she started complaining of headaches at the age of three. It happened that with more effort (I mean a school trip) she got very tired, vomiting, headaches from exhaustion.

On genetics, we found a duplication of five genes and a disorder of the protein receptor. This genetic disorder started with me and my daughter is also a "carrier". Slovakia has little options, so a few months ago they took blood again, they did a skin biopsy and sent it to Munich to the most specialized workplace. The results will be in two years at the earliest. For now, my daughter and I are rehabilitating, she needs to strengthen her muscles, her muscles are shortened and weak.

In the meantime, she developed congenital reflux (that's why she's still coughing), she takes medication, and most recently, since the beginning of the summer vacation, we've been struggling with her feet and fingers, according to everything, it's severe atopic eczema, but they haven't taken any treatment from dermatologists yet. He uses special soaps, creams, shampoos, only from the pharmacy. My parents help me take care of my daughter and myself, I hope and believe that they will be here as long as possible. Until my daughter grows up, because I don't know how long I will be here for her

It's hard to write it down, let alone say it. As the review doctor at the insurance company commented... that's a trilogy, so many errors, mistakes, attempts that the doctors made. They started the treatment, they forgot to take blood for some things, my condition rapidly worsened in 4 months... and that's because if they took blood, they would have found out that they shouldn't give me that treatment... etc.

We mainly need money for rehabilitation, medicines, consultations with doctors, and travel is also connected with this. Lia has all the specialist doctors in KE, they are the closest ones for children.

Hippotherapy, dolphin therapy, baths, the sea would also help her the most.

I once went to to swim with dolphins and it helped me a lot, I managed to do much more, it lasted me about half a year.

I especially want to help my wonderful daughter, who is always in a positive mood despite the pain (I guess that's because of me )

Lianka just wants to go to school like other children, she wants to have friends, to experience the wonderful things that belong to childhood.

I thank you all from the bottom of my heart for reading my story to the end, and if you can contribute a little this pre-Christmas time, we will be incredibly grateful.

With greetings and best wishes for a wonderful Christmas and all the best in the New Year

Andy and Lianka

Ahoj, volám sa Katarína a robím zbierku pre moju najlepšiu kamarátku Andreu a jej dcéru Lianu. Snažím sa im pomáhať organizovaním podujatí, no potrebujú oveľa viac. Tak prosím pomôžte, ak môžete. Toto je ich príbeh.....

"Volám sa Andrea,mám 40 rokov. Keď sa nad tým zamyslím môj kolotoč lekárov bol skoro od narodenia. Také väčšie problémy ako bolesti hlavy,únava,zanášanie do strán začali na ZŠ,ale všetci to pripisovalo tomu,že som "cintľavka",keď som nevládala behať na telesnej,vyjsť kopec domov bez prestávky a zadýchania.

Keď som mala 14 rokov,z minúty na minútu som prestala vidieť na pravé oko,hospitalizácie,vyšetrenia,podozrenie na sklerózu multiplex. Každým rokom mi pribúdali lézie na mozgu,ale moje príznaky boli atypické pre SM. Svalové slabosti boli stále,rodičia ma na rukách do nemocnice nosili,pretože som telo mala ako handru a nevedela ho ovladať. Choroba sa rozbehla 8 mesiacov po narodení dcérky,mojim telom šklbalo a trhalo,vyzeralo to ako Parkinsonský záchvat (myoklonické zášklby),potom mi od pása dole všetko stŕplo. Opäť likvor,ktorý nič neukázal, neurologické vyšetrenia,kde sa ukázalo,že moje svaly neatrofujú, ale miznú.

U dcérky ma začalo znepokojovať,keď sa mi v troch rokoch začala sťažovať na bolesti hlavy. Stalo sa,že pri väčšej námahe (myslím tým školský výlet) sa veľmi unavila,zvracanie,bolesti hlavy od vyčerpania.

Na genetike nám zistili duplicitu piatich génov a poruchu receptoru proteinu. Táto genetická porucha začala u mňa a dcéra je tiež "prenášateľ" Slovensko má malé možnosti,tak nám pred pár mesiacmi opäť odobrali krv,mne urobili biopsiu kože a odoslali to do Mníchova na najšpecializovanejšie pracovisko. Výsledky budú najskôr o dva roky. Zatiaľ s dcérou rehabilitujeme,potrebuje posilniť svaly,má ich skrátené a slabé.

Medzitým u nej vybehol vrodený reflux (preto stále kašle),berie lieky a najnovšie sa od začiatku letných prázdnin trápime s jej chodidlami a prstami na rukách,podľa všetkého je to silný atopický ekzém,ale zatiaľ žiadne liečby od kožných lekárov nezabrali. Používa špeciálne mydlá,krémy,šampóny,len z lekárne. So starostlivosťou o dcérku a aj o mňa mi pomáhajú rodičia,dúfam a verím,že tu budú čo najdlhšie. Kým dcérka nevyrastie, lebo ja neviem dokedy tu pre nu budem

Ťažko to tak v skratke spísať,aj povedať. Ako sa aj revízna doktorka v poisťovni vyjadrila...to je na trilógiu,toľko chýb,omylov,pokusov čo lekári robili. Nasadili liečbu,zabudli zobrať krv na nejaké veci,stav sa mi za 4 mesiace rapídne zhoršil...a to kvôli tomu,že keby vzali krv,tak by zistili,že tú liečbu mi nesmú dať...atd

Peniažky potrebujeme hlavne na rehabilitácie,lieky,konzultácie u lekároch,s tým je spojené aj cestovanie. Lia má všetkých odborných lekárov v KE,pre deti sú najbližšie tam.

Najviac by jej pomohla aj hipoterapia, delfínoterapia, kupele, more.

Ja som bola raz plavat s delfinmi a velmi mi to pomohlo viac som vládala, vydržalo mi to asi pol roka.

Ja chcem hlavne pomoct mojej úžasnej dcérke, ktorá je aj cez bolesti stale pozitivne naladena (to ma asi po mne )

Lianka len chce chodit do skoly ako ine deti, chce mat kamaratov, zazivat krasne veci ktore k detstvu patria.

Zo srdca vam vsetkym dakujem, ze ste si moj pribeh precitali az do konca, a ak nam mozete v tento predvianocny cas trosku prispiet, budeme vam neskutocne vdacne.

S pozdravom a zelanim krasnych Vianoc a vsetko dobre v Novom roku

Andy a Lianka