Together for Victor

My name is Adelina and, as I start writing this post, my soul is filled with plenty of faith, hope and desire to pursue the impossible, together with you. Terrible news came to our knowledge on April 4th, namely the news that our 11 months old son, Victor, suffers from Spinal Muscular Atrophy Type 1 – 4 copies

When Victor was only 5 months old, we decided to take him for a routine paediatric examination, as it seemed to us that Victor was not able to move his legs the same as other babies his age and that his hands were shaking quite a lot. After the examination, the paediatrician we saw suggested that I should not worry, because each baby has its own development rate and, as such, I do not need to also see a specialist doctor.

Nevertheless, I decided to seek another opinion and I went straight to a paediatric neurologist , hoping that this doctor would be able to provide me with the best guidance.

Given the difficulties arising from the COVID-19 situation, we only managed to see this specialist when Victor was 6 months and 5 days. As we went to this paediatric neurologist , our soul was filled with hope that our son Victor would be well and that we would return home feeling happy and released

In the doctors clinic, they’ve checked some of Victor’s reflexes, if he could grasp toys with his hands, if he could turn his head etc. Yet, the answer we got was the same – there is no reason to worry, it might just be Hypotonia. We got a prescription for Tonotil N and fish oil and we were supposed to return for a checkup after 3 months of treatment. We researched different sources for this diagnostic and we found that several kinethotherapy sessions might help; so, we did Bobath therapy, but without any result.

After the first month of Tonotil N, fish oil + Bobath, when Victor was 7 months old, we went for another paediatric checkup. Diagnostic: Hypotonia (although there was no evolution whatsoever). Treatment: Tonotil N + Calcium.

When Victor was 8 months old, we contacted the neurologist (the one who checked Victor when he was 6 months old) to inform her on Victor’s evolution – his hands were shaking the same as before and the lower part of the body presented the same softness . We were nevertheless suggested to continue with Tonotil for the 3rd month and for the following month, when we were supposed to go for a checkup, we were recommended to do some blood tests to see whether his has a Vitamin D insufficiency .

As Victor showed no signs of being able to sit up or crawl around - as standing up was out of the question - we decided to also seek another opinion from a different paediatric neurologist .

And so we did! We went for a chechup, we did the tests and we saw an endocrinologist. Diagnostic: Hypotonia. Recommendation: Tonotil + Vojta therapy.

Once home, we read about this therapy, we picked up the phone and contacted a physiotherapist who was willing to come to our home and help, so that Victor could be in the comfort of his home.

After 2 months of intensive Vojta (4 days a week), we went back to neurology: there was no evolution whatsoever.

 

During the checkup, there were no reflexes anymore in the upper and lower limbs and, in addition, Victor was in regression compared to the previous checkup at 8 months old. Diagnostic: Suspect of SMA (Spinal Muscular Atrophy) . We did the genetic test in Iași,Romania and the results came 20 days later (it would normally take 5 days at most in Iași to get such results, however the ineffectiveness of the system has again spoke its word). Diagnostic: SMA Type 1.

 

A few days after we found out the diagnostic, when we got over the shock of such terrible news, we realised that life as we knew it prior to this diagnostic was over. In such circumstances, you understand that no matter how much you may try, you will never be really able to enjoy anything the way you used to do before. No matter how much we try to simulate a smile, our soul is just a giant hole that can only be filled with the hope that he, our beloved son, will be able to walk and live a normal life.

 

On 18th of April, we started the treatment with the first dose of SPINRAZA, but our greatest desire is for the ZOLGENSMA therapy.

Because of these four copies, (SMA1-4copies) we are not accepted in Europe and, as such, we need to collect the huge amount of € 2.1 million. It is only with your help that we can collect this tremendous amount.

 

Any donation, contact, sharing, message, advice or guidance will mean a lot for us and for Victor, but, most importantly, all these efforts will bring him closer to a normal childhood and, in particular, to a normal life.

 

Kindly asking from the bottom of our heart, please help us in any way you can !

 

With love, faith & much hope, Victor’s parents,

 

Adelina & Valentin

#togetherforvictor

 

Donations can also be made on any of those platforms :

 

Titular: ADELINA DINESCU

IBAN: RO80RZBR0000060021411897

Valuta: Lei

Nume banca: Raiffeisen Bank

Cod Swift banca: RZBRROBU

 

Titular: ADELINA DINESCU

IBAN: RO46RZBR0000060023376759

Valuta: EUR

Nume banca: Raiffeisen Bank

Cod Swift banca: RZBRROBU

 

Titular: IOAN DINESCU

IBAN: RO82RZBR0000060017856132

Valuta: Lei

Nume banca: Raiffeisen Bank

Cod Swift banca: RZBRROBU

 

https://www.paypal.me/togetherforvictor

Join our journey on Facebook here 


Spinraza 2✔️
For 3 weeks now, you have been teaching us how to struggle, hope and be united, so we can be part of a miracle! 
You have the most wonderful smile, my dearest! You are the best thing that has ever happened to us! Please never forget: your mom and dad are here for you, by your side... for ever.
We have nothing but infinite love for you and we will never give up. #togetherforVictor
Good morning and enjoy your coffee, dear people!
I left Bucharest today as the second dose of Spinraza is scheduled for tomorrow.
I just wanted to share a bit about my condition. I am well, striving to move as much as I can during the 3 daily therapy sessions, but also while playing with mom and dead.
I wear the orthoses when I sleep and I am currently adjusting to them. I sometimes cry at night, as they are quite heavy, but I’ll get used to it.
My parents bought this special chair for me, so I can stand straight and avoid kyphosis or scoliosis as much as possible. 
Let me give you a strong hug! Thank you for being by my side, day after day! 

#togetherforVictor



Have you ever wondered how the mothers of special children get to be picked?
I am trying to imagine how God and the angels, sitting on the top of the Earth, are deliberating:
God says: This mother gets a baby boy, the other mother gets a baby girl.
At one point, God is in front of one of the mothers, looks to the angel and smiles.
God says:  This mother gets a special baby.
The curious angel replies: Why does it have to be her, God? She looks so happy...
God says, smiling: That is exactly the point! Could you give a special child to a mother who is unable to laugh? That would be cruel.
The angel replies: But would she be patient enough? 
God answers: I don’t need her to be very patient, as she would drown in an ocean of self-pity and despair. Once the shock and hurt feelings go away, she will manage. I took a good look at her today: she knows and trusts herself. 
Yes, she is a woman to be blessed with a special child. She does not know it yet, but it is she who will be envied. She will believe no more in words and she will never think a step is just a mere step and nothing more. And when her child will take his first steps for the first time, she will be there to bear witness to a miracle; and she will know it. And she will never be alone. I will be there by her side, each minute of each day of her life. 

If 990,000 people donated €2, we might be able to have the life-saving treatment for Victor!
Please continue to be by Victor’s side and share his story. He needs us all! 
Any amount brings us closer to the day when we can succeed, together! 

#togetherforVictor