Plea for help for my gravely ill daughter Andrea

Already as a 14-year-old girl, she went through the inflammation of the eye nerve, she is practically blind on her right eye and gradually losing sight on the left as well. Her doctors were uncertain about the diagnosis possibly saying it could be multiple sclerosis, but the exams were always inconclusive. They connected her symptoms such as: dizziness, muscle pain and falls to spine problems and low blood sugar.

As she was 31-year-old she gave birth to her daughter and when she was 8-months old, that was the time when health issues started, she was having difficulties walking and was having clonuses of the whole body. She could not feed her daughter because everything was flying off her hands and when she held her and started having clonuses, she would fear that she would unintentionally harm the baby.

At this stage we have all lived together, Andrea with her partner and their daughter and us her parents, because she simply needed help. But our apartment was on the third floor without an elevator, so with time she could not even go outside for walks. We have searched for a solution to give her life more quality and time to spend with her daughter outside. So (all of us) we have taken a mortgage together and build a 2-generation wheelchair friendly house. Throughout her 3-year treatment (she was finally diagnosed with multiple sclerosis a year after her daughter was born) she ended up on a wheelchair. But unfortunately, her partner could not cope with this situation anymore.

Her mental health worsened her physical state, her clonuses of her whole body intensified, and it also affected her speech. Although her now ex-boyfriend promised that he will continue to pay his share of the mortgage so she and his daughter can have a home, the situation has changed. He now wants to start a new life and doesn’t want to be burdened with this mortgage, where he is the co-owner. He is putting pressure on us to sell the house.

Finally, after many years the genetic exams have discovered that there is damage on multiple genes, which are linked to her muscle problems. We continue to go through further exams but at this stage her illness is incurable. Furthermore, they found out that her daughter inherited the damaged genes. So, we are hopeful, that the progress in medicine will be able to help and cure at least her daughter.

In the house my daughter and granddaughter are very happy and living their best lives possible under such circumstances. My daughter can devote her time to music and singing which she has studied. She also plays and composes her own music, mostly at night, because she is not able to sleep. Speaking nothing of the additional stress she would have to go through if we were to sell the house, the risks that we would have nowhere to go would kill her. In spite of all the misfortunes in her destiny, she is a remarkably positive person, she gives energy and optimism even to healthy people. She does not give up, even though there are times when she is really tired and under extreme muscle and bone pain, which became more recent lately.

Because the threat that we could lose our housing takes energy and will to live from us all, which we could give to our daughter and granddaughter, we cannot see any other way out than to sincerely ask for help of people with good heart and plead for help. Our mortgage is 130 000 Eur.

I am sorry to bother you with this, I have never asked for anything, but the love for my family and despair have pushed me to do this.

I sincerely thank everyone for their contribution.

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Dagmar Gasparova

Slovakia

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Slovenská verzia

Prosba o pomoc pre moju ťažko chorú dcéru Andreu

Už ako 14 ročná prekonala zápal očného nervu, na pravé oko je prakticky nevidiaca, zrak postupne stráca aj na ľavom oku. Lekári sa pohrávali s myšlienkou na diagnózu skleróza multiplex, ale vyšetrenia celé roky boli nejednoznačné, takže nejaké zdravotné ťažkosti, ako závraty, svalová slabosť, prípadne pády sa pripisovali chrbtici a nízkemu tlaku.Ako 31 ročná porodila, a keď jej dcérka mala 8 mesiacov, začali jej obrovské problémy s chôdzou a zášklbmi celého tela. Malú nemohla ani nakŕmiť, tanieriky jej vylietavali z rúk, keď vzala dieťa na ruky, tým, ako ju šklbalo, udierala ju rukou. Bývali sme spolu, ona s priateľom a malou a my, jej rodičia. Potrebovalapomoc. Keďže sme bývali na 3.poschodí bez výťahu, časom už nemohla chodiť ani na prechádzky. Hľadali sme riešenie, aby sme jej život čo najviac skvalitnili a umožnili jej venovať sa aktívne dieťaťu. Zadĺžili sme sa my, rodičia, aj oni, mladá rodina a postavil sa dvojgeneračný bezbariérový dom. V priebehu trojročnej liečby na sklerózu multiplex (rok po narodení dieťaťa jej ju diagnostikovali), sa moja dcéra dostala na invalidný vozík, a to jej partner, otec dieťaťa už prestal zvládať. Psychická nepohoda zhoršovala zdravotný stav mojej dcéry, zášklby celého tela boli intenzívne, postihovalo to aj reč. Aj keď jej (dnes už bývalý priateľ) sľúbil, že úver bude naďalej platiť, nepripraví svoje jediné dieťa a jej matku o strechu nad hlavou, dnes je situácia iná, chce začať nový život, nechce byť zaťažený hypotékou na tento dom, ktorého je spolumajiteľom .Tlačí na moju dcéru, a vlastne aj na nás, aby sa dom predal.

Konečne po mnohých rokoch zistili na genetike poruchu génov, ktoré súvisia s jej svalovými problémami, ešte stále beháme po vyšetreniach, liečba na tieto ochorenia nie je, lekári stále pátraju. Navyše sa zistilo, že chybné gény zdedila aj jej dcérka, toto všetko je ešte zisťované a vyšetrované. Dúfame, že aspoň u malej časom postúpi genetika tak, aby aspoň jej mohli pomôcť.

V dome je moja dcéra aj vnučka šťastná, má svoje zázemie, ktoré miluje. Dcéra sa môže nerušene venovať hudbe a spevu, ktorý vyštudovala, hrá a komponuje po nociach, lebo nemôže spávať. Nehovoriac o tom, že ďalší stres okolo predaja domu a riziká nemať kam ísť by ju už úplne položili. Napriek naozaj zlým ranám osudu je to neskutočne pozitívny človek, dokáže dávať energiu a pomáhať svojim optimizmom zdravým ľuďom, nevzdáva to, aj keď chvíle, kedy je veľmi unavená a trpí neznesiteľnými bolesťami svalov a kostí sú v poslednom období častejšie.

Pretože hrozba, že prídeme o bývanie nás oberá o energiu a sily, ktoré musíme venovať dcére a vnučke, nevidím iné východisko, len sa s prosbou obrátiť na ľudí s dobrým srdcom, a prosiť, veľmi prosiť o pomoc. Úver, ktorý sa ešte musí vyplatiť je cca 130 000 eur.

Ospravedlňujem sa za obťažovanie, je mi to trápne, nikdy som o nič nežobrala, ale láska k mojim najbližším a beznádej ma k tomu žiaľ, donútili.

Ďakujem veľmi veľmi pekne.

Dagmar Gášpárová

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