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Vision for Ciro

  • Almost ready to go home

      15 July 2024
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    It's been five weeks after the surgery, and Ciro has shown amazing progress with his vision.

    His right eye, first surgery, is still the strongest, and he gets frustrated if you cover that one. A good sign that he can see and wants to use it.

    The left eye: I think there has been some changes. It's hard to say because of the predominance of the other eye, but he has been asking even more questions, picking up on all sorts of drawings and identifying them, improving the range of colors he can see and most of all, a huge increase in his confidence.

    For those who have asked, his vision will improve to a certain point but it won't be perfect. But it has certainly changed immensely since last December. They estimate the vision reaches its peak and remains estable up to 6-7 months after surgery. So we could be reaching his first eye potential, let's see what happens with the second one.

    Let's hope the doctor confirms everything is still ok on Monday and then we will be officially dismissed to go home on Tuesday night.

    Thanks everyone for asking about Ciro, about me, and the rest of the family in NZ.

    We are well, healthy and still sane. We had lots of fun visiting friends in London, North of England and France. They all spoiled us kindly, showed love and patience. Seeing where they live and spending time with them was the fuel and boost I needed to keep me going.

    And we also went to Legoland. a real treat for Ciro for his hard work and resilience.

    Thanks again 💛🧡🧡💛

    Xx

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  • Second surgery: DONE

      9 June 2024
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    Finally, after feeling very, VERY nervous that anything could happen before or on surgery date, when the doctor came from the theatre to say that everything went as planned, I finally felt like a huge load on my back became lighter.

    I'm so glad and grateful my brother was able to come and join before D-day, spend a beautiful time with Ciro and then be of great support while Ciro was in theatre and after. Specially those first two hours when anesthesia is still lingering and they feel so miserable.

    The surgeon saw him on the following day, remove the eye patch and was very pleased how he was recovering.

    We still have appointments from now on every week to make sure everything keeps staying normal.

    But so far: Ciro sometimes complains about pain (every time Les and less), he is annoyed every time about the eye drops, but mainly he is VERY VERY happy.

    Fingers crossed everything keeps progressing nicely

    And again, we can't forget how we are here because people all around the world has helped us to make this happen for Ciro.

    Although I'm here with him physically, I'm fueled by everyone's support and kindness.

    Thanks again for helping us get here 🧡💛

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  • UK timezones again

      30 May 2024
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    We are finally back to London.

    The flights were hard, some better than others.

    Ciro is a strong boy on so many levels.

    3 hours flight

    1.15 wait

    14 hours flight

    4 hours wait

    7 hours flight

    1 hour drive

    He made lots of new friends in the airplane

    Kept asking people in English if they spoke Spanish

    Asked to.go home several times

    Asked about Dad and his sister, and grandparents

    But also wondering about Ronald McDonald house, and thinking the people he would see again. He has such a good memory!

    We played so many games and although I thought I was entertaining him, I think a lot of the times it was the other way round.

    Remember that for someone with low vision TV isn't appealing so it's a long way LONG LONG way.

    Ciro is excited to see his doctor again and we have been lucky to be staying with other families going through the same thing here at Ronald McDonald. If feels like an AIPL1 summit lol

    A small group of children very lucky To have this opportunity.

    Let hope everything keeps going well.

    After last time, I do not dare to uncross my finger and toes 😁

    Surgery is booked for 6th June

    We'll keep you posted!

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  • Stoked with big news

      2 May 2024
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    Soooo

    We are going back to the UK 💛

    While we were back in NZ, back at work, routines and enjoying the last bit of Summer and a beautiful mild Autumn, the teams in the UK have been working hard to get an answer for us. A GREAT answer.

    The surgeon has booked a surgery date: 6 June.

    After witnessing the great results in one eye, we have no doubts in going back. Ciro's vision has improved at least 25%. He is seeing more, building his confidence and a lot happier.

    The process is the same as the one back in January but this time we are going just Ciro and me. The experience it's not uncharted territory, so I feel confident I'll be able to support Ciro in every way possible. We still have a great network of friends, extended family and family who can help us while overseas and at home with Marcos.

    The other family that has been part of this great adventure going through the same thing with their little 3 year old is also going. It will be wonderful to share this ride again with such a beautiful family.

    Thanks for everyone who has asked about doing more fundraisers. We are very lucky, and grateful for all the support, because we still have enough funds to take Ciro to the other side of the world.

    We are keeping this page ope because we learnt that there are unpredictable scenarios and we just want to be ready as much as possible for any of them. So if we do end up needing help of any sorts, we'll keep you posted.

    This is all from us for now, but we'll be in touch :)

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  • Ciro is very happy

      10 April 2024
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    Although we haven't heard back from the UK team in regards to the second surgery (still unsure if it actually will happen), we are witness of Ciro's vision progress.

    His vision on his right eye has improved at least 20%. He is moving around with lots of confidence and even exploring new places (indoor or outdoor) a lot more.

    He is smiling all the time and he is asking a lot "what is this" pointing to pictures, drawings or objects around him in a distance that he wouldn't notice before.

    We feel so grateful for the opportunity in giving Ciro this amazing "gift" and we are so conscious we wouldn't have done it without your support.

    We'll keep you posted on and let's hope there will be more News soon

    :)

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  • We are home

      5 March 2024
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    If we thought it was already a rollercoaster, the last weeks have been Six Flags + Disney and Universal Studios altogether.

    Unfortunately there was a bad timing between the Gene therapy "expiring", hospitals theatres and other politics. We are hoping the shell life of the gene therapy can be extended, the hospital approves and some other "rocks" on the way can be moved.

    Once this happens, if it does, we can talk again with the team and hopefully we can come back for the second time, second eye, second chance. Lots of things need to fall into right place and although they Say it's unlikely, we still hope we can go back.

    There are so many people involved, lots of work, risks and benefits to be assessed, that we want to thank everyone who has been part of it and helpes us achieve what we have so far. We won't forget them, and we Hope they don't forget us.

    Most importantly, the first eye has recovered well and we have noticed changes in his vision.

    Our main doctor has gone above and beyond. He has shown to be extremely professional, trusting and caring. A Huge thank you to him.

    Also, we met the other family who was going through the same as us and I can say it has made a huge difference. They are an amazing family and we feel we had great friends to share this journey with 🧡

    These two months with the kids has been a lifetime opportunity and I think we made the most of it, every second.

    We are very happy to be at home, reunite with our friends and family, and breathe NZ.

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  • We are going home 🧡

      24 February 2024
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    If we thought it was a rollercoaster before, the last two weeks have been Six Flags + Disney and Universal Studios altogether.

    Unfortunately there was a bad timing between the Gene therapy "expiring" and hospitals theatres. We are hoping the Lab can extend the shell life of the gene therapy and the hospital team is happy with it.

    Once this happens, if it does, we can talk again with the team and hopefully we can come back for the second time, second eye, second chance.

    We don't have dates for this, but let's Hope it's as soon as possible.

    The first eye is recovering really well. The doctor is happy and we have noticed changes too. This is why we feel sad the second eye hasn't happened yet but we feel optimistic we can come back in April-May.

    Our doctor has gone above and beyond. He has shown to be extremely professional, trusting and caring.

    Also, we met the other family who is here for the same reason and I can say it has made a huge difference to be here with them. They are an amazing family and feel we have friends to share this journey with 🧡

    These two months sharing 24/7 with the kids it's a lifetime opportunity and I think we made the most of it. Them and us have been growing lots with the experiences we had here in London.

    We wish we could say we did what we came to do, but most importantly is that we still have chances to get it done.

    Can't wait to see our friends and family in NZ and be at home. And recharge to come back 🤞💪🤞💪🤞💪🤞

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  • Still waiting (with high hopes)

      13 February 2024
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    We are seeing the doctor tomorrow, still in Hope they can find a way for Ciro's second surgery to happen.

    Keep sending those positive thoughts, prayers, good vibes, lit candles and anything else you can think of

    Xx

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  • (Continue) Some disappointing news

      20 January 2024
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    This raised some questions about the surgery done two weeks ago. He is convinced and confident that when he did the procedure, if something had been wrong he would have noticed. But also it was thawed, diluted , filtered in less than 30 minutes(less time than labs tests)

    At the moment there is no inflammation in Ciro's operated eye. And all signs are positive. But he will have to keep an eye on (lol) and monitor closely.

    Next steps:

    Reduce the steroids dose because it's unlikely there will be another surgery and side effects are not worse the wait.

    Monitor closely the first eye

    Wait for the Lab at least two weeks to se if they come up with solutions stabilizing the current Gene therapy (although if they find the way in doing this, it'd be the first time and haven't been tested before, so the doctor doesn't know if it is safe)

    We went through a big rollercoaster of emotions. I guess now is sadness, but also reassuring that we want Ciro to be safe, that we've done everything in our reach.

    We hope nothing happens to the first eye, we Hope the gene therapy worked (we will know within months), and we wonder if this is all happening for an unknown, bigger plan for Ciro (a bit holistic we know lol) and a huge learning curve for us.

    Thanks again everyone for the support. We have been feeling that we are not alone in this, and THAT has made all the difference.

    Kia haha 🧡❤️‍🩹

    (Image caption: Ciro and Ayla doing yoga the morning of the surgery day)

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  • Some disappointing news

      20 January 2024
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    After a fun but challenging fasting morning entertaining Ayla and Ciro we arrived at the hospital 1:30pm. We met the doctor and he was dressed in his regular clothes. First clue something wasn't right.

    He told us that he couldn't perform the surgery because the gene therapy (the virus he injects in the aye that carries the modified DNA) didn't pass a test.

    He explained that he wanted to book other families to come to London for the same treatment but because the expiring date of the gene therapy was end of Feb he needed check with the lab/pharmaceutical who created the gene therapy if this was possible. When they thawed and tested a vail a day before the surgery (17 Jan), after 30minutes the gene therapy started to show some solidified elements (which are not good for the eye and procedures.

    After calling the doctor and expressing their concerns they tested 3 more vails. All of them did the same, hence, didn't pass the tests.

    The doctor is very aversed to risk and he believed it wasn't safe to do the surgery because the high chances of thawing another vail and being bad. Putting this bad Gene therapy on Ciro's eye would have severe consequences, and a lot of them are theoretical... It has never happened before.

    (Will continue on a different Post)

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  • Second surgery 18 January

      17 January 2024
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    In the lead up to the second surgery, Ciro behave like a champ today while doctors were studying his Brain response to images on the screen.

    It's a lot for him to take in but he has been very smiley and happy all along.

    He is enjoying we are all four here, and you can tell how much he takes from what each one of us has to give him in every single moment.

    It has made a huge difference and the support we have received here has Ben incredible too.

    A big shoilut out to Ronald McDonald house Evelina that have been spoiling in a very kind way Ayla and Ciro

    And to out friends who have been here with us showing us around, helping us distractin, sharing moments and creating memories.

    We are all learning here, in. Lot of different ways.

    Thanks again everyone for your support, and sorry if we haven't been able to respond the messages. Every moment is full on with the two little ones. Lol

    Thanks again!

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  • Right eye surgery went as expected

      5 January 2024
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    The Dr just told as the surgery went as he expected.

    He was very happy with the surgery and how things went :)

    Ciro will be grumpy but he is recovering well

    He was very happy before going to the theatre, just upset when it was "time to sleep"

    It was very funny and emotional to hear a team of 6 of the medical stuff singing old macdonald had a farm and Twinkle twinkle little star lol

    Ciro cried

    I cried

    Then he was asleep

    The o cried a little bit more

    And then we went for breakfast and waited to hear the good news.

    He is a real champ.

    Thanks everyone for the support.

    Surgery costs were a total of 33k NZD, so we couldn't be here without your support.

    There is still a lot going on, but we are doing really well.

    Thank you 🧡

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    • 05/01/2024 by Alexandra

      What a wee superstar Ciro is! (and all of you)

      You have been in our thoughts and we are so pleased to hear that surgery went well!

      Sending all of our aroha - your BestStart Pioneer whanau ❤

    • 08/01/2024 by Suzette

      Fantastic news! You are so brave and strong Ciro! Hoping for a smooth recovery 💛

  • Thursday 28 December

      4 January 2024
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    Ciro and the family met Dr Neruban Kumaran

    We signed palera and went through risks and benefits again

    Ciro the hero.

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  • Flights are booked, time to pack (we'll wave Santa in the sky)

      16 December 2023
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    We want to share with everyone that they have confirmed surgery dates and now we are ready for the second stage..

    It has been a very stressful last 10 days because they have said that the hospital is not going to cover their fees, so now we need to pay £5950 x2 and £2380 x2 (around 32k NZD)

    But because of all the support we have received, from this page, the market, fundraisers, and other donations we were able to confirm we are capable to go and do this for Ciro.

    It's going to be tight, let's hope everything goes well and there are no more surprises, and we should be ok.

    But because everything is so uncertain we are going to keep the page open until the end February which is when it's meant all to be over.

    We are off on Xmas day.

    First surgery 4 January

    Second surgery 18 January

    There is still a lot to get done, but we are getting closer.

    Thanks again everyone and we'll keep you posted

    Lots of love

    Xoxo

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  • Your kind words fuel our Patience and waiting

      29 November 2023
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    We are in the difficult moment of feeling in limbo waiting to hear from the research team to give us a date to travel. So your kind words gives us strengths. To keep waiting "patiently"

    Thank again everyone!

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  • Thank you for coming!

      8 November 2023
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    The fundraiser stall at the Latin Street Festival was a huge success. It was wonderful to see so many friends, teachers, colleagues, and new people too!

    We worked really hard on the lead up with lots of support from chopping onions, to cutting paper, sorting efpost, cooking, baking, donating to even standing next to the stall sorting avivados o going to buy last minute buns.

    THANK YOU everyone.

    We sold everything!

    And those who donated extra to your meals, or donated recently, Ciro and out family are stoked by the support and makes us stronger to keep working for this cause.

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  • Latin Street Festival

      2 November 2023
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    We rae going to have a fundraiser stall at this fun Latin Market, selling some delicious food with South American flavors.

    Features music, dance and colour. Offering street food, Latin cocktails, live music, a Latin live DJ, and performances in the heart of Christchurch.

    We would love to see you there, and thank you for your support again :)

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  • "Don't stop me now"

      27 October 2023
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    One more time we want to thank you for all your support!

    Because we want to extend our fundraising journey off-line too, we are having a stall at the Latin Street Festival, 4 November from 3pm-8pm. We are going to be selling some mouthwatering South American food. We know it's not much, but this is a small token of giving something back and working extra hard for this cause.

    Lots of friends and extended family have been helping us to make this possible: so a special shout-out to all of you!

    We are on the move 💛

    Photo caption:

    Yup, he doesn't look at the camera because he doesn't really know where it is, but he is a clever boy and manages to ride his scooter and knows exactly where you are. Big enhance of all the other senses, right?

    https://ccc.govt.nz/news-and-events/whats-on/event/latin-street-festival-2

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  • Heartfelt Thanks for Your Support and Generosity!

      19 October 2023
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    We want to express one more time our deepest gratitude for your incredible support and generosity towards our little boy's journey towards better vision.

    Your contributions, both in terms of financial donations and emotional support, have touched our hearts in ways we cannot put into words. It is through the collective strength of kind-hearted individuals that we find the courage and hope to face the challenges that lie ahead.

    With your help, we have made remarkable progress in our fundraising efforts. This brings us one step closer to providing our little one with the life-changing treatment he needs. Your willingness to stand beside us during this difficult time is nothing short of a blessing.

    As we move forward on this path, we carry your kindness in our hearts, knowing that there are compassionate souls out there who believe in our cause. Your support has not only provided financial relief, but it has also given us a renewed sense of hope and purpose.

    We will keep you all updated on our little boy's progress and the steps we take towards his treatment abroad. Your generosity has empowered us to pursue every possible avenue to ensure his future is filled with brightness and possibility.

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  • On the News

      9 October 2023

    We'd like to share a bit more Ciro's story on how we found out he had LCA AIPL1 and what this surgery means to us. What involves making this decision and understand more how the surgery works.

    https://www.nzherald.co.nz/nz/toddler-suffering-from-one-in-a-million-leber-congenital-amaurosis-takes-medical-leap-of-faith/YUBCVIWBT5CRHLXABZ7EFNDROU/

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    • 10/10/2023 by Gemma

      I read the article. What a journey you have all been on. It actually reminds me a lot of my journey with my son who has 2 rare genetic conditions- one of them causing him to loose 80% of his vision within a year. I’m also in CHCH so if you ever want to chat to another Mum battling to keep their child’s vision- feel free to reach out to me. I’m happy to provide my contact details. Hoping you guys reach your goal and that the trip will be as beneficial as hoped.

      Gemma

  • Gratitude: from Latin gratus ‘pleasing, thankful’.

      5 October 2023

    It's been a very emotional week in so many ways... Your donations and messages fill our hopes and hearts to keep working really hard to make this possible. Lots of love and beautiful messages from all over the world. They make us smile and cry in the most unpredictable times (after a tool box meeting in front of colleagues, or midmorning in the office with workmates, managers and CEO, ooops).

    We wish we could give a big hug to everyone, the support is huge.

    THANK YOU! Thank you for sharing, donating and been there for us.

    💛🧡

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  • Feeling grateful

      4 October 2023

    Thanks everyone for taking the time to read the story about Ciro, and for your very kind generosity to help us be one step closer to this unique opportunity. Thanks you from the bottom of our hearts!

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