Save Alexa
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EN: A mother's Confession and Prayer to the World! Please, #SaveAlexa!
My sweet daughter, Alexa, came into our lives on September 19, 2019, and as soon as we held her in our arms we were overwhelmed with love and happiness. A happy and healthy baby is one of life’s most precious gifts, a parent’s blessing from above and a dream come true. Sadly, in our case, it was exactly this dream that proved too beautiful to be real and soon to be taken away from us.
Within only a month after giving birth, my maternal instincts made me aware that something wasn’t right - Alexa was moving her legs less and less. Fearful, we ran to the emergency neurologist specialist who gave us the cruel diagnosis - "suspicion of Spinal Amyotrophy Type I". We knew nothing about this rare condition, but as we began reading about it online, our world started to spin, and we were overwhelmed by fear.
With the most excruciating pain in our hearts, we learned that Alexa is suffering from a rare genetic disease, which affects motor neurones. This causes inefficiency of the major bodily organs, especially of the respiratory system. Most babies diagnosed with SMA type 1 do not generally survive past two years of age. All the joy we felt when Alexa was born turned into deep, profound sadness and despair. However, that was just the starting point of the dark times that lay ahead of us.
The first step in our fight against this unforgiving disease was to discover that in Romania, babies with SMA-1 can be enrolled into a treatment program with Spinraza. This is a medicine which helps those who suffer from SMA-1 by improving motor function. This is done by injecting a dose of the medicine every 4 months for the rest of your life and, unfortunately, it does not cure the disease.
This glimpse of hope dimmed soon after, as Alexa developed severe pneumonia, and we were admitted into the paediatric resuscitation department. Over the course of two weeks, Alexa fought for her life helped by the wonderful doctors who made every effort humanly possible not to connect our baby to life support machines. We are grateful that Alexa managed to overcome the pneumonia, but she has lost all of her strength, including the ability to eat on her own, and was being fed through the nasogastric tube.
On December 24, 2019, Alexa received the first Spinraza dose, which is at the same time a lifesaving but excruciating treatment. As a mother, I can’t even begin to describe the rush of emotions that flooded my heart: 5 ml of fluid were removed from Alexa’s spine and 5 ml of Spinraza were injected, without my baby being sedated. It was devastating to be there and see this, but the thought that gave me power was that Alexa’s life will be a little bit improved after.
Unfortunately, Spinraza is only able to delay the inevitable. The only treatment that can stop the illness from progressing is called ZOLGENSMA, a new gene therapy which comes under the form of a one-dose treatment. As cruel as fate can be sometimes, this life-saving procedure comes at an incredible cost: 2.100.000 $ - a huge amount of money for anyone, an impossible amount for a modest family like ours, coming from one of Europe’s poorest countries. Without government support and after asking all our close relatives and friends for help, our only beam of hope can come from the goodness of people out there.
We are racing against time, as Alexa is now 10 months old and she has to receive the lifesaving treatment before she turns 2. Our goal to reach 2.100.000 $ seems very far away, while the time we have left is very short. However, we know and trust that kindness is not in short supply and that people will help us.
I know it is a lot to ask, but here I am on my knees, begging the world to save my baby. This is the ONLY CHANCE our little girl has. And we, as parents, will do whatever it takes to make this possible. We are asking with all our hearts for your help, so that our baby can play, laugh and dance just like any other child. She is a wonderful and loving little girl and she deserves a normal life. But we can only achieve this with your involvement and generosity.
I brought Alexandra into this world, but you can give her LIFE! Thank you!
RO
Confesiunea si rugamintea unei mame catre o lume intreaga!! #SaveAlexa
Aceasta este fiica mea, Alexandra, nascuta intr-o frumoasa zi de sarbatoare "Ciuda" lui Arhanghelul Mihail, 19.09.2019.
Dar totul a fost prea frumos ca sa fie adevarat.
Peste o luna de la nastere, instinctul matern a inceput sa bata alarma ca ceva este in neregula - Alexandra a inceput tot mai timid sa-si miste piciorusele.
Adresandu-ne la medicul neurolog, de urgenta, am fost internate cu diagnosticul ambulator "suspiciune de amiotrofie spinala tip I". Mi-a fugit pamantul de sub picioare...cautind pe Google despre diagnoza, am ramas fara grai - este o boala genetica incurabila, care afecteaza neuronii motori si-i face pe copii imobilizati la pat, iar pina la virsta de 18 luni, majoritatea fac stop respiratie si mor. Atita durere nu am mai simtit vreodata, dar zilele intunecate abia incepeau.
Am aflat ca in Romania exista un proiect unde copii sint injectati cu Spinraza (la fiecare 4 luni toata viata), medicamentul care ii poate ajuta. Dar peste 5 zile, cu o pneumonie severa, am ajuns in sectia de reanimare pediatrica unde timp de doua saptamani, Alexa si medicii, au luptat ca sa nu fie conectata la aparat. Slava Domnului ca am reusit, doar ca ea si-a pierdut toate puterile, inclusiv de a manca singurica (acum este hranita prin sonda nasogastrica, si da, eu am invatat sa i-o schimb singura). La 24 decembrie 2019, am primit prima doza.
Emotii de nedescris: ii scot 5 ml de lichid din coloana vertebrala si ii introduc 5 ml de Spinraza, fara a fi sedata...mi-e greu sa asist la aceasta scena, dar gandul ca asta ii va face bine ne incurajeaza pe amindoua. Stiu, suntem abia la inceput de cale, dar cred in copilul meu si in bunavointa oamenilor c-o pot salva! Scopul nostru final, este sa beneficiem de ZOLGENSMA, vaccinul de 2.100.000 dolari care ii poate stopa evolutia bolii, dar poate fi administrat doar pina la varsta de 2 ani. Recunosc, e o suma incredibil de mare, dar de ea depinde viata copilului meu si ca parinte sunt gata sa indur orice, doar s-o pot ajuta! ...totodata, avem nevoie si de 2 aparate: BiPaP si coughassist care i-ar permit sa respire mai usor. De aceia, fac apel catre toti oamenii buni care vor si pot sa ne ajute!
Eu am adus-o pe Alexandra pe lume, dar voi ii puteti darui VIATA!
RU
Это моя дочь Александра, которая родилась в день «Праздника воспоминания чуда Архангела Михаила», 19.09.2019. Но все было слишком прекрасно, чтобы быть правдой. Через месяц после родов материнский инстинкт начал бить тревогу, что что-то не так -у Александры начали слабеть ноги. Обратившись к неврологу, был поставлен диагноз «подозрение на спинальную амиотрофию типа I». В этот момент земля ушла из под ног... читая в Google про этот диагноз, я осознавала на сколько это серьезно - это неизлечимое генетическое заболевание, которое поражает двигательные нейроны и делает детей неподвижными , и до возраста 18 месяцев, большинство детей не доживает они умирают от остановки дыхания. Сердце сжималось от боли , но темные дни только начинались. Я узнала, что в Румынии есть проект, где детям вводят препарат Spinraza (каждые 4 месяца всю жизнь) он помогает, но не лечит окончательно болезнь. Но через 5 дней дочка с тяжелой пневмонией попала в отделение детской реанимации, где в течение двух недель Алекса и доктора изо всех сил боролись, чтобы не допустить подключения к аппарату искусственного дыхания. Слава Богу, это удалось, только Алекса потеряла все свои силы, даже поесть не было сил (ее кормили через назогастральный зонд, и да, я научилась менять его в одиночку). 24 декабря 2019 года была введена первая доза препарата Spinraza. Процедура сложная : из позвоночника откачивают 5 мл жидкости и вводят взамен 5 мл Spinraza, требуется много сил смотреть на эту процедуру, но мысль, что это пойдет на пользу, воодушевляет нас обоих. Я знаю, мы только в начале пути, но я верю в моего ребенка и в добрую волю людей, которые помогут спасти ее! Наша цель – вакцина ZOLGENSMA, которая стоит 2.125.000 долларов США, она может остановить развитие болезни, но ее можно вводить только в возрасте до 2 лет. Я понимаю это фантастически огромная сумма, но от нее зависит жизнь моего ребенка, и, как любая мать , я готова на все, зная что есть хоть малейший шанс на спасение жизни малышки . Поэтому я обращаюсь ко всем людям, которые хотят и могут нам помочь! Александра пришла в этот мир, но останется она в нем ЖИТЬ или нет зависит от каждого из нас!
My sweet daughter, Alexa, came into our lives on September 19, 2019, and as soon as we held her in our arms we were overwhelmed with love and happiness. A happy and healthy baby is one of life’s most precious gifts, a parent’s blessing from above and a dream come true. Sadly, in our case, it was exactly this dream that proved too beautiful to be real and soon to be taken away from us.
Within only a month after giving birth, my maternal instincts made me aware that something wasn’t right - Alexa was moving her legs less and less. Fearful, we ran to the emergency neurologist specialist who gave us the cruel diagnosis - "suspicion of Spinal Amyotrophy Type I". We knew nothing about this rare condition, but as we began reading about it online, our world started to spin, and we were overwhelmed by fear.
With the most excruciating pain in our hearts, we learned that Alexa is suffering from a rare genetic disease, which affects motor neurones. This causes inefficiency of the major bodily organs, especially of the respiratory system. Most babies diagnosed with SMA type 1 do not generally survive past two years of age. All the joy we felt when Alexa was born turned into deep, profound sadness and despair. However, that was just the starting point of the dark times that lay ahead of us.
The first step in our fight against this unforgiving disease was to discover that in Romania, babies with SMA-1 can be enrolled into a treatment program with Spinraza. This is a medicine which helps those who suffer from SMA-1 by improving motor function. This is done by injecting a dose of the medicine every 4 months for the rest of your life and, unfortunately, it does not cure the disease.
This glimpse of hope dimmed soon after, as Alexa developed severe pneumonia, and we were admitted into the paediatric resuscitation department. Over the course of two weeks, Alexa fought for her life helped by the wonderful doctors who made every effort humanly possible not to connect our baby to life support machines. We are grateful that Alexa managed to overcome the pneumonia, but she has lost all of her strength, including the ability to eat on her own, and was being fed through the nasogastric tube.
On December 24, 2019, Alexa received the first Spinraza dose, which is at the same time a lifesaving but excruciating treatment. As a mother, I can’t even begin to describe the rush of emotions that flooded my heart: 5 ml of fluid were removed from Alexa’s spine and 5 ml of Spinraza were injected, without my baby being sedated. It was devastating to be there and see this, but the thought that gave me power was that Alexa’s life will be a little bit improved after.
Unfortunately, Spinraza is only able to delay the inevitable. The only treatment that can stop the illness from progressing is called ZOLGENSMA, a new gene therapy which comes under the form of a one-dose treatment. As cruel as fate can be sometimes, this life-saving procedure comes at an incredible cost: 2.100.000 $ - a huge amount of money for anyone, an impossible amount for a modest family like ours, coming from one of Europe’s poorest countries. Without government support and after asking all our close relatives and friends for help, our only beam of hope can come from the goodness of people out there.
We are racing against time, as Alexa is now 10 months old and she has to receive the lifesaving treatment before she turns 2. Our goal to reach 2.100.000 $ seems very far away, while the time we have left is very short. However, we know and trust that kindness is not in short supply and that people will help us.
I know it is a lot to ask, but here I am on my knees, begging the world to save my baby. This is the ONLY CHANCE our little girl has. And we, as parents, will do whatever it takes to make this possible. We are asking with all our hearts for your help, so that our baby can play, laugh and dance just like any other child. She is a wonderful and loving little girl and she deserves a normal life. But we can only achieve this with your involvement and generosity.
I brought Alexandra into this world, but you can give her LIFE! Thank you!
RO
Confesiunea si rugamintea unei mame catre o lume intreaga!! #SaveAlexa
Aceasta este fiica mea, Alexandra, nascuta intr-o frumoasa zi de sarbatoare "Ciuda" lui Arhanghelul Mihail, 19.09.2019.
Dar totul a fost prea frumos ca sa fie adevarat.
Peste o luna de la nastere, instinctul matern a inceput sa bata alarma ca ceva este in neregula - Alexandra a inceput tot mai timid sa-si miste piciorusele.
Adresandu-ne la medicul neurolog, de urgenta, am fost internate cu diagnosticul ambulator "suspiciune de amiotrofie spinala tip I". Mi-a fugit pamantul de sub picioare...cautind pe Google despre diagnoza, am ramas fara grai - este o boala genetica incurabila, care afecteaza neuronii motori si-i face pe copii imobilizati la pat, iar pina la virsta de 18 luni, majoritatea fac stop respiratie si mor. Atita durere nu am mai simtit vreodata, dar zilele intunecate abia incepeau.
Am aflat ca in Romania exista un proiect unde copii sint injectati cu Spinraza (la fiecare 4 luni toata viata), medicamentul care ii poate ajuta. Dar peste 5 zile, cu o pneumonie severa, am ajuns in sectia de reanimare pediatrica unde timp de doua saptamani, Alexa si medicii, au luptat ca sa nu fie conectata la aparat. Slava Domnului ca am reusit, doar ca ea si-a pierdut toate puterile, inclusiv de a manca singurica (acum este hranita prin sonda nasogastrica, si da, eu am invatat sa i-o schimb singura). La 24 decembrie 2019, am primit prima doza.
Emotii de nedescris: ii scot 5 ml de lichid din coloana vertebrala si ii introduc 5 ml de Spinraza, fara a fi sedata...mi-e greu sa asist la aceasta scena, dar gandul ca asta ii va face bine ne incurajeaza pe amindoua. Stiu, suntem abia la inceput de cale, dar cred in copilul meu si in bunavointa oamenilor c-o pot salva! Scopul nostru final, este sa beneficiem de ZOLGENSMA, vaccinul de 2.100.000 dolari care ii poate stopa evolutia bolii, dar poate fi administrat doar pina la varsta de 2 ani. Recunosc, e o suma incredibil de mare, dar de ea depinde viata copilului meu si ca parinte sunt gata sa indur orice, doar s-o pot ajuta! ...totodata, avem nevoie si de 2 aparate: BiPaP si coughassist care i-ar permit sa respire mai usor. De aceia, fac apel catre toti oamenii buni care vor si pot sa ne ajute!
Eu am adus-o pe Alexandra pe lume, dar voi ii puteti darui VIATA!
RU
Это моя дочь Александра, которая родилась в день «Праздника воспоминания чуда Архангела Михаила», 19.09.2019. Но все было слишком прекрасно, чтобы быть правдой. Через месяц после родов материнский инстинкт начал бить тревогу, что что-то не так -у Александры начали слабеть ноги. Обратившись к неврологу, был поставлен диагноз «подозрение на спинальную амиотрофию типа I». В этот момент земля ушла из под ног... читая в Google про этот диагноз, я осознавала на сколько это серьезно - это неизлечимое генетическое заболевание, которое поражает двигательные нейроны и делает детей неподвижными , и до возраста 18 месяцев, большинство детей не доживает они умирают от остановки дыхания. Сердце сжималось от боли , но темные дни только начинались. Я узнала, что в Румынии есть проект, где детям вводят препарат Spinraza (каждые 4 месяца всю жизнь) он помогает, но не лечит окончательно болезнь. Но через 5 дней дочка с тяжелой пневмонией попала в отделение детской реанимации, где в течение двух недель Алекса и доктора изо всех сил боролись, чтобы не допустить подключения к аппарату искусственного дыхания. Слава Богу, это удалось, только Алекса потеряла все свои силы, даже поесть не было сил (ее кормили через назогастральный зонд, и да, я научилась менять его в одиночку). 24 декабря 2019 года была введена первая доза препарата Spinraza. Процедура сложная : из позвоночника откачивают 5 мл жидкости и вводят взамен 5 мл Spinraza, требуется много сил смотреть на эту процедуру, но мысль, что это пойдет на пользу, воодушевляет нас обоих. Я знаю, мы только в начале пути, но я верю в моего ребенка и в добрую волю людей, которые помогут спасти ее! Наша цель – вакцина ZOLGENSMA, которая стоит 2.125.000 долларов США, она может остановить развитие болезни, но ее можно вводить только в возрасте до 2 лет. Я понимаю это фантастически огромная сумма, но от нее зависит жизнь моего ребенка, и, как любая мать , я готова на все, зная что есть хоть малейший шанс на спасение жизни малышки . Поэтому я обращаюсь ко всем людям, которые хотят и могут нам помочь! Александра пришла в этот мир, но останется она в нем ЖИТЬ или нет зависит от каждого из нас!
Fundraising team: Marta Iacob (1)
Virginia Vintu
Organizer
Carol Stream, IL
Marta Iacob
Beneficiary
Marta Iacob
Team member