Заедно можем да сбъднем мечтата на Милена Together we can make Milena's dream come true

Tratamento, medicina e reabilitação 1/7

Заедно можем да сбъднем мечтата на Милена Together we can make Milena's dream come true

 Doadores
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Doados: 142.62 EUR Objetivo: 110000 EUR
Organizador
Милена Велковска
Data final
Fim após 168 dias
Montante disponível
142.62 EUR
Милена Велковска é o organizador da campanha
Fim após 168 dias
Montante disponível
142.62 EUR

Казвам се Милена, на 45 години съм и от раждането ми живея с церебрална парализа. От 26 години съм в София и сама се справям с ежедневните предизвикателства. Придвижването ми е силно затруднено. Нямам добър баланс, не мога да се качвам и слизам от тротоара, затова редовно ходя пеша по пътното платно. Благодаря на всички шофьори, че са ме пазят. Не мога да се качвам и слизам по стълби без парапет… Не мога да изкачвам планински върхове, макар че в преносен смисъл съм покорила много. Била съм стажант към Европейската комисия в Брюксел, участвала съм в програма “Еразъм”, била съм доброволка в национални и международни проекти…

За да мога да се справям с ежедневните ми задачи и да запазя подвижността ми, редовно ходя на рехабилитация и плуване. Освен че ми помагат да остана във форма, доколкото е възможно, тези занимания ме зареждат емоционално и са важна част от живота ми. От друга страна обаче, вече отдавна не напредвам, което много ме натъжава…

Сама открих шанс за трайно подобряване на състоянието ми чрез животопроменяща операция, чиято цел е трайно намаляването на сковаността (спастичността) в долните крайници, което се постига чрез селективно прекъсване на свръхактивните сензорни нервни коренчета в гръбначния мозък. Операцията се нарича селективна дорзална ризотомия (SDR) и не се извършва в България.

Най-много опит с лечението на спастичността имат неврохирурзите в САЩ. Някои от тях обаче оперират само деца, други ми отказаха, защото смятат, че след интервенцията може да настъпи влошаване на състоянието ми, трети се съгласиха да разгледат случая, при условие че отида лично на преглед в Америка, а това е невъзможно за мен основно по финансови причини…

Надеждата дойде от д-р Kaveh Asadi, опитен неврохирург от Paley Orthopedic & Spine Institute, West Palm Beach, Florida, САЩ. След като попълних подробен формуляр, изпратих видеа и ЯМР на мозъка и проведохме онлайн консултация, той стигна до заключението, че съм отличен кандидат за процедурата сективна дорзална ризотомия.

След тази интервенция и високоинтензивна рехабилитация ще мога по-стабилно да пазя равновесие и да ходя по-лесно самостоятелно във всякаква среда. Самостоятелното придвижване е жизненоважно за мен. Няма на кого да разчитам, тъй като живея сама в София.

Други очаквани ползи за мен, упоменати в подписания от д-р Асади документ, са:

  • Подобрен баланс и издръжливост
    • Подобрена мобилност и независимост в ежедневните дейности
    • Подобрен контрол на болката и намалена нужда от ортопедични интервенции
    • Повишена способност за участие в социалния и професионалния живот
    • Намаляване на медицинските разходи през целия живот чрез предотвратяване на вторични усложнения
    • Подобрено сърдечно-съдово здраве и продължителност на живота

За възрастни със спастична диплегия SDR предлага възможност за възстановяване контрола над собственото им тяло и движение след години живот със скованост и умора.

Очаква се общата цена на лечението ми, включително операция, хоспитализация и следоперативна рехабилитация, да бъде приблизително сто хиляди щатски долара ($100,000 USD). След консултация с ортопед на място ще се прецени дали имам нужда и от отпускаща ортопедична операция. Най-изгодният вариант е двете да бъдат извършени непосредствено една след друга с една упойка и в една операционна.

За насрочване на дата за операцията е необходимо да заплатя депозит в размер на десет хиляди щатски долара ($10,000 USD), който след това ще бъде приспаднат от общата сума. Планираният престой във Флорида ще бъде с продължителност поне пет седмици, четири от които са за следоперативна рехабилитация.

Аз съм първата българка в по-зряла възраст, одобрена за тази операция. Досега от България са оперирани само деца.

Моля, помогнете ми да сбъдна мечтата ми, да бъда сред Вас, да живея по-пълноценно!
Дарете и разпространете тази кампания.

Вярвам, че заедно ще успеем!

Благодаря Ви от сърце!

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A Chance to Reclaim My Life: Help Milena Walk Freely 

My name is Milena. I'm 45 years old, and for the first time in my life, I have a real chance to transform how I move through the world.

I've lived with cerebral palsy since birth. For 26 years, I've called Sofia home, navigating daily life with severe mobility challenges—poor balance, difficulty managing stairs and sidewalks, constant physical fatigue. I walk on roads because I cannot safely navigate curbs. Simple tasks that most people take for granted require careful planning and tremendous effort.

Yet despite these physical limitations, I have refused to be limited by them. I've been an intern at the European Commission in Brussels. I've participated in the Erasmus program. I've volunteered in national and international projects. I've built a life of meaning and contribution. But I've done it while constantly fighting my own body.

The burden of spasticity is exhausting. The stiffness in my lower limbs creates constant tension, pain, and fatigue. Rehabilitation and swimming help me maintain what mobility I have and provide emotional renewal, but for years now—despite my best efforts—I have not been able to progress. This stagnation has been heartbreaking.

A Medical Breakthrough Offers Real Hope

Then I discovered selective dorsal rhizotomy (SDR)—a specialized neurosurgical procedure that can permanently reduce spasticity by selectively interrupting overactive sensory nerve roots in the spinal cord. For adults with spastic cerebral palsy, this surgery offers something I've dreamed of: the chance to regain control of my own body.

The challenge? This surgery is not performed in Bulgaria. Most neurosurgeons who perform SDR work only with children. Many refused to consider my case as an adult, believing the risks outweighed potential benefits. Others demanded expensive in-person evaluations in the United States—financially impossible for me.

Then I found Dr. Kaveh Asadi.

Dr. Asadi, a leading neurosurgeon at the Paley Orthopedic & Spine Institute in West Palm Beach, Florida, reviewed my detailed medical history, videos, MRI scans, and conducted a thorough online consultation. His conclusion: I am an excellent candidate for SDR. He believes this procedure can give me my life back.

What This Surgery Will Mean for Me

After SDR and intensive post-operative rehabilitation, I expect to experience:

  • Improved balance and steadier, more confident walking
  • Greater independence in daily activities (no more relying on others for basic mobility)
  • Better pain control and reduced need for future orthopedic interventions
  • Freedom to participate more fully in social and professional life
  • Better cardiovascular health and longer life expectancy
  • Reduced lifetime medical costs by preventing secondary complications

For the first time in 45 years, I could walk freely and independently in any environment. For someone who lives alone in Sofia with no family to rely on, independent mobility isn't a luxury—it's essential to my dignity and survival.

The Investment in My Future

The total cost of my treatment—surgery, hospitalization, and four weeks of intensive post-operative rehabilitation in Florida—is approximately $100,000 USD. This is an investment in not just my physical health, but my independence, my career prospects, and my quality of life for decades to come.

To schedule my surgery date, I need to secure a $10,000 USD deposit, which will be credited toward the total cost. My stay in Florida will be at least five weeks—including the surgery and four weeks of critical rehabilitation.

An orthopedic surgeon will evaluate me on-site to determine if additional orthopedic procedures are needed. The most practical approach would be to perform any necessary procedures together with SDR under a single anesthesia, minimizing risk and cost.

A Historic Moment for Bulgaria

I am the first Bulgarian woman of adult age to be approved for this procedure. Until now, only children from Bulgaria have undergone SDR. Your support doesn't just change my life—it opens a door for other adults in Bulgaria and across the region who have been told their condition is unchangeable.

Together, We Can Make This Happen

I have spent 45 years adapting to limitations. I have proven I can achieve extraordinary things despite my physical challenges. Now, I'm asking for your help to give me something I've never had: a body that works with me, not against me.

Your donation—whether it's $5, $50, $500, or more—brings me closer to reclaiming my independence and my future. Please donate and share this campaign with anyone who might help.

I believe that together, we will succeed.

Thank you from the bottom of my heart!

 

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GEMEINSAM KÖNNEN WIR MILENA´S TRAUM ERFÜLLEN!

 

Ich heiße Milena, bin 45 Jahre und lebe seit meiner Geburt mit Cerebralparese. Seit 26 Jahren lebe ich allein in Sofia und bewältige selbstständig die alltäglichen Herausforderungen.

 

Mich bewegen fällt mir sehr schwer. Ich habe kein gutes Gleichgewicht, kann nicht auf den Gehsteig hoch- und runter kommen. Aus diesem Grund laufe ich mich immer auf der Straße.  Vielen Dank an alle Autofahrer, die auf mich Rücksicht nehmen. Ich kann keine Treppenstufen ohne Geländer hoch- oder runter gehen… Ich kann nicht hoch in die Berge, obwohl ich im übertragenen Sinn viele Berge bezwungen habe. Ich war Praktikantin bei der Europäischen Kommission in Brüssel, Erasmusstudentin in Rostock, habe freiwillig bei mehreren Projekten auf nationaler und internationaler Ebene mitgewirkt.

 

Um meinen Alltag bewältigen und meine Beweglichkeit so lange wie nur möglich erhalten zu können, mache ich regelmäßig Reha und schwimme für mein Leben gern. Diese Aktivitäten halten mich fit, sorgen für mein seelisches Wohlbefinden und sind ein wesentlicher Bestandteil meines Lebens. Andererseits komme ich aber nicht vorwärts, was mich sehr traurig macht… 

 

Durch eine lebensverändernde Operation, die die Steifheit (Spastik) in meinen Beinen dauerhaft reduzieren soll, ergibt sich für mich die Chance auf eine dauerhafte Verbesserung meines Zustands. Dies wird durch die gezielte Durchtrennung der überaktiven sensorischen Nervenwurzeln im Rückenmark erreicht. Die Operation heißt selektive dorsale Rhizotomie (SDR) und wird in Bulgarien nicht durchgeführt.

 

Die Neurochirurgen in den USA haben die größte Erfahrung in der Behandlung von Spastik. Allerdings operieren einige von ihnen nur Kinder, andere lehnten mich ab, weil sie befürchteten, mein Zustand könnte sich nach dem Eingriff verschlechtern, und wieder andere erklärten sich bereit, meinen Fall zu prüfen, unter der Bedingung, dass ich persönlich zur Untersuchung in die USA reise, was mir hauptsächlich aus finanziellen Gründen unmöglich ist.

 

Die Hoffnung kam von Dr. Kaveh Asadi, einem erfahrenen Neurochirurg am PaleyOrthopedic & Spine Institute, West Palm Beach, Florida. Nachdem ich ein ausführliches Formular, Videos und MRT-Aufnahmen meines Gehirns zugeschickt und eine Online–Sprechstunde mit ihm hatte, kam Dr. Asadi zum Schluss, ich bin für den SDR-Eingriff perfekt geeignet.

 

Nach dieser OP und intensiver Rehabilitation wird mein Gleichgewicht stabiler und ich werde mich in jeder Umgebung leichter und selbstständiger fortbewegen können. Unabhängige Mobilität ist für mich lebenswichtig. Da ich allein in Sofia lebe, habe ich niemanden, auf den ich mich verlassen kann.

 

Weitere erwartete Vorteile für mich, die in dem von Dr. Assadi unterzeichneten Schreiben aufgeführt sind, sind: 

 

  • Verbesserte Balance und Ausdauer

 

  • Verbesserte Mobilität und Unabhängigkeit im Alltag

 

  • Verbesserte Schmerzkontrolle und geringerer Bedarf an orthopädischen Eingriffen

 

  • Erhöhte Fähigkeit zur Teilhabe am sozialen und beruflichen Leben

 

  • Reduzierte lebenslange Gesundheitskosten durch Vermeidung von Folgeerkrankungen 

 

  • Verbesserte Herz-Kreislauf-Gesundheit und Lebenserwartung

 

Für Erwachsene mit spastischer Diplegie bietet die SDR die Möglichkeit, nach jahrelangem Leben mit Steifheit und Erschöpfung die Kontrolle über ihren eigenen Körper und ihre Bewegungen zurückzuerlangen.

 

Die Gesamtkosten meiner Behandlung, einschließlich Operation, Krankenhausaufenthalt und postoperativer Rehabilitation, werden voraussichtlich etwa 100.000 US-Dollar betragen. Nach Rücksprache mit einem Orthopäden vor Ort wird entschieden, ob zusätzlich eine orthopädische Operation erforderlich ist. Die kostengünstigste Option wäre, beide Eingriffe unmittelbar nacheinander, unter einer einzigen Narkose und im selben Operationssaal durchzuführen.

 

Um einen Operationstermin zu vereinbaren, muss ich eine Anzahlung von zehntausend US-Dollar (10.000 USD) leisten, die dann vom Gesamtbetrag abgezogen wird. Der geplante Aufenthalt in Florida beträgt mindestens fünf Wochen. Vier Wochen davon sind für die postoperative Rehabilitation vorgesehen.

 

Ich bin die erste Erwachsene aus Bulgarien, die für diese Operation zugelassen wurde. Bisher wurden aus Bulgarien nur Kinder operiert. 

 

Bitte helfen Sie mir, meinen Traum zu verwirklichen, unter Ihnen zu sein und ein erfüllteres Leben zu führen!

 

Spenden Sie und teilen Sie diese Kampagne. 

 

Ich glaube fest daran, dass wir es gemeinsam schaffen werden! 

 

Vielen herzlichen Dank!

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ВМЕСТЕ МЫ МОЖЕМ СБЫТЬ МЕЧТУ МИЛЕНЫ

 

 Меня зовут Милена, я живу с церебральным параличом уже 45 лет, 26 лет живу в Софии и самостоятельно справляюсь с повседневными трудностями. Мое передвижение сильно затруднено. У меня плохое чувство равновесия, я не могу подниматься на тротуар и спускаться с него, поэтому регулярно передвигаюсь по проезжей части, хотя я пешеход. Спасибо всем водителям, что берегут меня. Я не могу подниматься и спускаться по лестнице без перил... Я не могу подниматься на горные вершины, но в переносном смысле я покорила многое – я была стажером в Европейской комиссии в Брюсселе, участвовала в программе «Эразмус», была волонтером в национальных и международных проектах... Чтобы справляться с повседневными задачами и сохранить подвижность, я регулярно хожу на реабилитацию и плавание. Помимо того, что они помогают мне оставаться в форме, насколько это возможно, эти занятия заряжают меня эмоционально и являются важной частью моей жизни. С другой стороны, однако, я уже давно не прогрессирую, что очень меня огорчает...

 

Я сама нашла шанс для стойкого улучшения своего состояния с помощью операции, которая изменит мою жизнь и направлена на стойкое уменьшение скованности (спастичности) в нижних конечностях, что достигается путем избирательного прерывания гиперактивных сенсорных нервных корешков в спинном мозге. Операция называется селективная дорзальная ризотомия (SDR) и не проводится в Болгарии.

 

Наибольший опыт в лечении спастичности имеют нейрохирурги в США. Некоторые из них, однако, оперируют только детей, другие отказали мне, потому что считают, что после вмешательства мое состояние может ухудшиться, третьи согласились рассмотреть мой случай при условии, что я лично поеду на обследование в Америку, а это для меня невозможно...  

 

Надежда появилась благодаря доктору Kaveh Asadi, опытному нейрохирургу из Paley Orthopedic & Spine Institute, Уэст-Палм-Бич, Флорида, США. После того, как я заполнил подробную анкету, отправил видео и МРТ головного мозга и мы провели онлайн-консультацию, он пришел к выводу, что я являюсь отличным кандидатом для процедуры селективной дорзальной ризотомии.

 

После этой операции и интенсивной реабилитации я смогу более стабильно держать равновесие и легче ходить самостоятельно в любой обстановке. Самостоятельное передвижение жизненно важно для меня, потому что мне не на кого положиться. 

 

 

Другие ожидаемые преимущества для меня, упомянутые в документе, подписанном доктором Асади, включают:

 

  • Улучшение баланса и выносливости

 

  • Улучшение подвижности и независимости в повседневных действиях

 

  • Улучшение контроля боли и снижение потребности в ортопедических вмешательствах

 

  • Повышенная способность участвовать в социальной и профессиональной жизни 

 

  • Снижение медицинских расходов на протяжении всей жизни за счет предотвращения вторичных усложнений

 

  • Улучшенное здоровье сердечно-сосудистой системы и продолжительность жизни 

 

Для взрослых со спастической диплегией SDR предлагает возможность восстановить контроль над собственным телом и движениями после многих лет жизни с скованностью и усталостью.

 

Ожидается, что общая стоимость моего лечения, включая операцию, госпитализацию и послеоперационную реабилитацию, составит примерно сто тысяч долларов США ($100 000 USD). После консультации с ортопедом на месте будет решено, нужна ли мне также ортопедическая операция. Наиболее выгодный вариант — обе операции провести сразу после друг друга под одним наркозом и в одной операционной.

 

Я первая одобренная болгарка в более зрелом возрасте. До сих пор для этой операции из Болгарии одобрялись только дети. 

 

Пожалуйста, помогите мне осуществить мою мечту, быть среди вас, жить полноценной жизнью. 

 

Сделайте пожертвование и распространите информацию об этой кампании. 

 

Я верю, что вместе мы сможем!

 

Спасибо вам от всего сердца!

 

I have been living with cerebral palsy for 45 years and have been living with cerebral palsy since my birth. I have been living in Sofia since 26 years and I manage my own daily life with cerebral palsy. My mobility is severely impaired. I can't get a good balance, I can't get a good quality and I can't slip from the sidewalk, but I have to walk on the toll plaza. Thanks to all the chauffeurs, che sa me pazat. I can't do it and slip down the stilbies without a parapet... I can't do it, I can't do it, I can't do it, I can't do it, I can't do it, I can't do it. I was an intern for the European Commission in Bruxelles, participated in the Erasmus program, volunteered in national and international projects....

To be able to cope with daily tasks and to increase my mobility, I have been rehabilitating and swimming. In addition to helping me stay in shape as long as possible, these activities are emotionally stimulating and an important part of my life. From the other country, both, it is not long ago that I did not prejudge much....

We have opened a chance for a traumatic adjustment of my condition through abdominal replacement surgery, the aim of which is a traumatic reduction of spasticity in the long extremities, which is achieved by selective suppression of the sensory nerve roots in the horny brain. The operation is called selective dorsal rhizotomy (SDR) and is not available in Bulgaria.

Neurosurgeons in the United Arab Emirates have much experience with the treatment of spasticity. Some of them both operate on children themselves, others refuse, because they are afraid that the intervention may lead to an increase in their condition, and one third of them agree to examine the case on the condition that they will personally go to America, which is impossible for me mainly for financial reasons....

Hope comes from Dr. Kaveh Asadi, a neurosurgeon at Paley Orthopedic & Spine Institute, West Palm Beach, Florida, USA. After completing a detailed form, using video and NMR images of the brain and online consultation, he concluded that he was an excellent candidate for a dorsal rhizotomy procedure.

Following this intervention and viscointensivist rehabilitation, he can stabilize his balance and walk independently in any environment. Independent mobility is vital for me. I don't have anyone to talk to, since I live in Sofia by myself.

Other important things for me, mentioned in the document signed by Dr. Asadi, are:

  • A balanced balance and flexibility
    - Similar mobility and independence in daily activities
    - Better control of pain and low need for orthopedic interventions.
    - Increased ability to participate in social and professional life
    - Prevention of secondary complications through the prevention of medical interventions in the whole body.
    - Improved cardiovascular health and longevity of the stomach

For adults with spastic diplegia SDR offers an opportunity to regain control over their own traction and movement after a year of abdominal stiffness and hilarity.

The total cost of treatment, including surgery, hospitalization and post-operative rehabilitations, is estimated to be approximately one hundred hundred million US dollars ($100,000 USD). After consulting with an orthopedist at the place of residence, it is important to determine if you also need orthopedic surgery. The most suitable option is to have two surgeries performed directly one after the other with one bed and in one operating room.

To set a date for the operation, you must pay a deposit of one hundred million dollars ($10,000 USD), which will be added to the total amount. The planned stay in Florida will be for a period of one week, four of which will be for post-operative rehabilitation.

I am the first Bulgarian woman of advanced age to be approved for such an operation. Dosega from Bulgaria have operated on children themselves.

Please help me to fulfill my dream to live in your midst and to live a full life!
Give and spread this campaign.

We will do it in time!

Thanks to you from my heart!

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A Chance to Reclaim My Life: Help Milena Walk Freely

My name is Milena. I'm 45 years old, and for the first time in my life, I have a real chance to transform how I move through the world.

I've lived with cerebral palsy since birth. For 26 years, I've called Sofia home, navigating daily life with severe mobility challenges-poor balance, difficulty managing stairs and sidewalks, constant physical fatigue. I walk on roads because I cannot safely navigate curbs. Simple tasks that most people take for granted require careful planning and tremendous effort.

Yet despite these physical limitations, I have refused to be limited by them. I've been an intern at the European Commission in Brussels. I've participated in the Erasmus program. I've volunteered in national and international projects. I've built a life of meaning and contribution. But I've done it while constantly fighting my own body.

The burden of spasticity is exhausting. The stiffness in my lower limbs creates constant tension, pain, and fatigue. Rehabilitation and swimming help me maintain what mobility I have and provide emotional renewal, but for years now-despite my best efforts-I have not been able to progress. This stagnation has been heartbreaking.

A Medical Breakthrough Offers Real Hope

Then I discovered selective dorsal rhizotomy (SDR)-a specialized neurosurgical procedure that can permanently reduce spasticity by selectively interrupting overactive sensory nerve roots in the spinal cord. For adults with spastic cerebral palsy, this surgery offers something I've dreamed of: the chance to regain control of my own body.

The challenge? This surgery is not performed in Bulgaria. Most neurosurgeons who perform SDR work only with children. Many refused to consider my case as an adult, believing the risks outweighed potential benefits. Others demanded expensive in-person evaluations in the United States-financially impossible for me.

Then I found Dr. Kaveh Asadi.

Dr. Asadi, a leading neurosurgeon at the Paley Orthopedic & Spine Institute in West Palm Beach, Florida, reviewed my detailed medical history, videos, MRI scans, and conducted a thorough online consultation. His conclusion: I am an excellent candidate for SDR. He believes this procedure can give me my life back.

What This Surgery Will Mean for Me

After SDR and intensive post-operative rehabilitation, I expect to experience:

  • Improved balance and steadier, more confident walking
  • Greater independence in daily activities (no more relying on others for basic mobility)
  • Better pain control and reduced need for future orthopedic interventions
  • Freedom to participate more fully in social and professional life
  • Better cardiovascular health and longer life expectancy
  • Reduced lifetime medical costs by preventing secondary complications

For the first time in 45 years, I could walk freely and independently in any environment. For someone who lives alone in Sofia with no family to rely on, independent mobility isn't a luxury-it's essential to my dignity and survival.

The Investment in My Future

The total cost of my treatment-surgery, hospitalization, and four weeks of intensive post-operative rehabilitation in Florida-is approximately $100,000 USD. This is an investment in not just my physical health, but my independence, my career prospects, and my quality of life for decades to come.

To schedule my surgery date, I need to secure a $10,000 USD deposit, which will be credited toward the total cost. My stay in Florida will be at least five weeks-including the surgery and four weeks of critical rehabilitation.

An orthopedic surgeon will evaluate me on-site to determine if additional orthopedic procedures are needed. The most practical approach would be to perform any necessary procedures together with SDR under a single anesthesia, minimizing risk and cost.

A Historic Moment for Bulgaria

I am the first Bulgarian woman of adult age to be approved for this procedure. Until now, only children from Bulgaria have undergone SDR. Your support doesn't't just change my life-it opens a door for other adults in Bulgaria and across the region who have been told their condition is unchangeable.

Together, We Can Make This Happen

I have spent 45 years adapting to limitations. I have proven I can achieve extraordinary things despite my physical challenges. Now, I'm asking for your help to give me something I've never had: a body that works with me, not against me.

Your donation-whether it's $5, $50, $500, or more-brings me closer to reclaiming my independence and my future. Please donate and share this campaign with anyone who might help.

I believe that together, we will succeed.

Thank you from the bottom of my heart!

**********************************

GEMEINSAM KÖNNEN WIR MILENA´S TRAUM ERFÜLLEN!

Ich heiße Milena, bin 45 Jahre und lebe seit meiner Geburt mit Cerebralparese. Seit 26 Jahren lebe ich allein in Sofia und bewältige selbststständig die alltäglichen Herausforderungen.

Mich bewegen fällt mir sehr schwer. Ich habe kein gutes Gleichgewicht, kann nicht auf den Gehsteig hoch- und runter kommen. Aus diesem Grund laufe ich mich immer auf der Straße. Vielen Dank an alle Autofahrer, die auf mich Rücksicht nehmen. Ich kann keine Treppenstufen ohne Geländer hoch- oder runter gehen... Ich kann nicht hoch in die Berge, obwohl ich im übertragenenen Sinn viele Berge bezwungen habe. Ich war Praktikantin bei der Europäischen Kommission in Brüssel, Erasmusstudentin in Rostock, habe freiwillig bei mehreren Projekten auf nationaler und internationaler Ebene mitgewirkt.

Um meinen Alltag bewältigen und meine Beweglichkeit so lange wie nur möglich erhalten zu können, mache ich regelmäßig Reha und schwimme für mein Leben gern. Diese Aktivitäten halten mich fit, sorgen für mein seelisches Wohlbefinden und sind ein wesentlicher Bestandteil meines Lebens. Andererseits komme ich aber nicht vorwärts, was mich sehr traurig macht ....

Durch eine lebensverändernde Operation, die die die Steifheit (Spastik) in meinen Beinen dauerhaft reduzieren soll, ergibt sich für mich die Chance auf eine dauerhafte Verbesserung meines Zustands. Dies wird durch die gezielte Durchtrennung der überaktiven sensorischen Nervenwurzeln im Rückenmark erreicht. Die Operation heißt selektive dorsale Rhizotomie (SDR) und wird in Bulgarien nicht durchgeführt.

Die Neurochirurgen in den USA haben die größte Erfahrung in der Behandlung von Spastik. Allerdings operieren einige von ihnen nur Kinder, andere lehnten mich ab, weil sie befürchteten, mein Zustand könnte sich nach dem Eingriff verschlechtern, und wieder andere erklärten sich bereit, meinen Fall zu prüfen, unter der Bedingung, dass ich persönlich zur Untersuchung in die USA reise, was mir hauptsächlich aus finanziellen Gründen unmöglich ist.

Die Hoffnung kam von Dr. Kaveh Asadi, einem erfahrenen Neurochirurg am PaleyOrthopedic & Spine Institute, West Palm Beach, Florida. Nachdem ich ein ausführliches Formular, Videos und MRT-Aufnahmen meines Gehirns zugeschickt und eine Online-Sprechstunde mit ihm hatte, kam Dr. Asadi zum Schluss, ich bin für den SDR-Eingriff perfekt geeignet.

Nach dieser OP und intensiver Rehabilitation wird mein Gleichgewicht stabiler und ich werde mich in jeder Umgebung leichter und selbststständiger fortbewegen können. Unabhängige Mobilität ist für mich lebenswichtig. Da ich allein in Sofia lebe, habe ich niemanden, auf den ich mich verlassen kann.

Weitere erwartete Vorteile für mich, die in dem von Dr. Assadi unterzeichneten Schreiben aufgeführt sind, sind:

  • Verbesserte Balance und Ausdauer

  • Verbesserte Mobilität und Unabhängigkeit im Alltag

  • Verbesserte Schmerzkontrolle und geringerer Bedarf an orthopädischen Eingriffen

  • Erhöhte Fähigkeit zur Teilhabe am sozialen und beruflichen Leben

  • Reduzierte lebenslange Gesundheitskosten durch Vermeidung von Folgeerkrankungen

  • Verbesserte Herz-Kreislauf-Gesundheit und Lebenserwartung

Für Erwachsene mit spastischer Diplegie bietet die SDR die Möglichkeit, nach jahrelangem Leben mit Steifheit und Erschöpfung die Kontrolle über ihren eigenen Körper und ihre Bewegungen zurückzuerlangen.

Die Gesamtkosten meiner Behandlung, einschließlich Operation, Krankankenhausaufenthalt und postoperativer Rehabilitation, werden voraussichtlich etwa 100,000 US-Dollar betragen. Nach Rücksprache mit einem Orthopäden vor Ort wird entschieden, ob zusätzlich eine orthopädische Operation erforderlich ist. Die kostengünstigste Option wäre, beide Eingriffe unmittelbar nacheinander, unter einer einzigen Narkose und im selben Operationssaal durchzuführen.

Um einen Operationstermin zu vereinbaren, muss ich eine Anzahlung von zehntausend US-Dollar (10,000 USD) leisten, die dann vom Gesamtbetrag abgezogen wird. Der geplante Aufenthalt in Florida beträgt mindestens fünf Wochen. Vier Wochen davon sind für die postoperative Rehabilitation vorgesehen.

Ich bin die erste Erwachsene aus Bulgarien, die für diese Operation zugelassen wurde. Bisher wurden aus Bulgarien nur Kinder operiert.

Bitte helfen Sie mir, meinen Traum zu verwirklichen, unter Ihnen zu sein und ein erfüllteres Leben zu führen!

Spenden Sie und teilen Sie diese Kampagne.

Ich glaube fest daran, dass wir es gemeinsam schaffen werden!

Vielen herzlichen Dank!

*******************

TOGETHER WE CAN MAKE MILENA'S DREAM COME TRUE

My name is Milena, I have been living with cerebral palsy for 45 years, I have been living in Sofia for 26 years and I manage everyday difficulties independently. My mobility is very difficult. I have a poor sense of balance, I cannot go up and down the sidewalk, so I regularly move on the roadway, even though I am a pedestrian. Thank you to all the drivers for keeping me safe. I can't go up and down stairs without a handrail..... I can't climb mountain peaks, but figuratively I have conquered many things - I was an intern at the European Commission in Brussels, participated in the Erasmus program, volunteered in national and international projects... In order to cope with everyday tasks and maintain mobility, I regularly go to rehab and swimming. Besides helping me to stay as fit as possible, these activities energize me emotionally and are an important part of my life. On the other hand, however, I haven't progressed in a long time, which is very frustrating for me....

I myself have found a chance for a lasting improvement in my condition with a life-changing surgery that aims to permanently reduce stiffness (spasticity) in my lower limbs, which is achieved by selectively interrupting overactive sensory nerve roots in the spinal cord. The operation is called selective dorsal rhizotomy (SDR) and is not performed in Bulgaria.

Neurosurgeons in the USA have the most experience in the treatment of spasticity. Some of them, however, operate only on children, others refused me because they believe that my condition may worsen after the intervention, others agreed to consider my case on condition that I personally go to America for examination, which is impossible for me...

Hope came thanks to Dr. Kaveh Asadi, an experienced neurosurgeon from Paley Orthopedic & Spine Institute, West Palm Beach, Florida, USA. After I filled out a detailed questionnaire, sent a video and MRI of my brain and we had an online consultation, he concluded that I was an excellent candidate for a selective dorsal rhizotomy procedure.

After this surgery and intensive rehabilitation, I will be able to keep my balance more consistently and walk more easily on my own in any environment. Independent mobility is vital to me because I have no one to rely on.

Other expected benefits for me mentioned in the document signed by Dr. Asadi include:

  • Improved balance and stamina

  • Improved mobility and independence in daily activities

  • Improved pain control and reduced need for orthopedic interventions

  • Increased ability to participate in social and professional life

  • Reduced lifetime medical costs by preventing secondary complications

  • Improved cardiovascular health and life expectancy

For adults with spastic diplegia, SDR offers the opportunity to regain control of their own body and movements after years of living with stiffness and fatigue.

The total cost of my treatment, including surgery, hospitalization and post-operative rehabilitation, is expected to be approximately one hundred thousand dollars ($100,000 USD). After an on-site consultation with an orthopedist, it will be decided whether I also need orthopedic surgery. The most advantageous option is to have both surgeries immediately after each other under the same anesthesia and in the same operating room.

I am the first approved Bulgarian at a more mature age. So far only children have been approved for this surgery from Bulgaria.

Please help me to realize my dream, to be among you, to live a full life.

Make a donation and spread the word about this campaign.

I believe that together we can do it!

Thank you from the bottom of my heart!

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