Vanessa Bestetti

A long-awaited update on Rick ❤️ Hi beautiful community!! The past couple of months have been extraordinarily beautiful, busy, intense and full of blessings. Since arriving in Italy in early July, Rick has completed his second cycle of REAC neuromodulation therapy at the Istituto Rinaldi Fontani, and we have observed some truly meaningful changes. One of the most significant is that Rick has started moving his bowels spontaneously, something that had been one of our greatest concerns for a long time. He also began moving his arms and neck more independently, and we noticed improvements in his swallowing. With medical guidance, we were able to stop one of the medications used to dry his secretions. Since then, his secretions and the number of times he requires suctioning each day have reduced significantly. For Rick, this means greater comfort, better sleep, improved recovery and a better quality of life. After completing the treatment, we welcomed Rick’s grandparents from Brazil to Italy. They stayed with us for three weeks, giving us precious time together. We also travelled to London for a few days, our first international family trip together in more than ten years. It was beautiful to explore a new city and create memories as a family. However, travelling with a child with complex medical needs is never simple. While in London, Rick struggled to tolerate his feeds. I had to replace his nasogastric tube and search local pharmacies for a different formula because he could no longer tolerate the one we had brought. After London, we spent a few days in Rome before Rick’s grandparents returned to Brazil. At the beginning of August, Rick’s condition suddenly declined. He had a seizure and appeared significantly unwell, so we were taken to Bambino Gesù Children’s Hospital. Following neurological assessments, no further seizure activity was identified. However, because Rick’s feeding tolerance had been declining for several months, we discussed placing a PEG feeding tube directly into his stomach. Doctors discovered that Rick had developed esophagitis and ulceration in his oesophagus, potentially associated with having a nasogastric tube for more than three years. When we arrived, I did not even know which hospital we were in. Through the help of many people in our social media community, I learned that Bambino Gesù is one of Europe’s leading children’s hospitals. Knowing that Rick was in such a highly specialised hospital gave me the confidence to proceed with surgery. Initially, I was told that the waiting time could be two to three months. However, after I spoke with the hospital’s chief and explained Rick’s circumstances during a meeting with eight specialists, the team expedited the procedure and arranged it within only two days. These are the true miracles of our journey: God opening doors we could never have foreseen and guiding us to a place where one of Rick’s long-standing problems could finally be addressed. I had never felt confident proceeding with the surgery in Australia. During a previous consultation, I was told that the surgeon had never performed the procedure on a child with Tay-Sachs and did not believe it was worthwhile because of Rick’s limited life expectancy. But Rick’s comfort and quality of life are always worthwhile. No one can predict the future, and I believe my child will live longer than the statistics say. Having this opportunity in Rome, surrounded by an experienced and compassionate team, felt like an extraordinary blessing. The first attempt to place the PEG was unsuccessful because Rick’s stomach was positioned too high for an endoscopic procedure. Over the following days, he received a different formula, additional hydration and regular abdominal massage. His bowel function improved considerably, and his stomach moved into a better position. The surgical team prepared for a more invasive laparoscopic procedure, but during the second attempt, they were able to place the PEG successfully through endoscopy. We believe the improvement in Rick’s bowel function following his REAC treatment played an important role in helping his body reach this point. This surgery can make an enormous difference to Rick’s digestion, comfort and wellbeing. Most importantly, it provides a safer and more sustainable way for him to receive the nutrition and hydration he needs. We spent nearly a month at Bambino Gesù while Rick underwent assessments, surgery and recovery. He experienced significant pain and required pain relief during the first few weeks, but once he was stable, we finally returned to Florence. Shortly after our return, Rick experienced another decline. We noticed unusual movements that appeared to be seizures, so we called an ambulance and went to Meyer Children’s Hospital. After two extended EEGs and neurological assessments, doctors confirmed that the movements were not caused by epileptic activity. They are myoclonic jerks, or myoclonus. Although it was another frightening experience, this information was incredibly valuable. We now understand the movements better and know how to keep Rick comfortable. Most importantly, the doctors advised that these jerks do not represent the same neurological risk as seizures and do not require anti-seizure rescue medication. We have now been home for approximately one week. During this time, we have carefully balanced Rick’s nutrition, hydration and bowel movements, and we finally seem to have found a routine his body tolerates well. He has been sleeping better and appears more peaceful and comfortable. We were even able to take him out over the weekend. After so many weeks inside hospitals, simply seeing him outdoors and sharing a gentle family moment felt like an incredible gift. Our journey in Italy has brought hope and meaningful improvements, but it has also involved unexpected hospital admissions, additional accommodation costs, emergency transport, specialist care, surgery, new feeding supplies and additional support workers to manage Rick’s increased daily and overnight care. Every donation helps us continue accessing the treatments, medical care, equipment and daily support Rick needs. By donating or sharing this page, you are helping give him greater comfort, more opportunities and the best quality of life possible. You are also giving me the precious gift of more time to create beautiful memories with my boy, without the constant fear of how I will afford everything he needs. Thank you for continuing to pray for us, support us and carry us through every chapter. While we were in hospital, I read your beautiful messages of love and encouragement and honestly, they made all the difference. Hospital stays are among the most vulnerable moments of this journey for me. Knowing that so many hearts were with us brought me peace during moments of deep fear and uncertainty. Your messages reminded me that God was taking care of us every step of the way, working through each person chosen to walk beside us. I truly believe that God works through people. So many doors have opened for Rick through the beautiful hearts surrounding us. Please continue to pray for Rick and keep us in your hearts. We love you all! Our army of love, fighting this battle alongside us. ❤️ With so much love and gratitude, Vanessa and Rick

A long-awaited update on Rick ❤️ Hi beautiful community!! The past couple of months have been extraordinarily beautiful, busy, intense and full of blessings. Since arriving in Italy in early July, Rick has completed his second cycle of REAC neuromodulation therapy at the Istituto Rinaldi Fontani, and we have observed some truly meaningful changes. One of the most significant is that Rick has started moving his bowels spontaneously, something that had been one of our greatest concerns for a long time. He also began moving his arms and neck more independently, and we noticed improvements in his swallowing. With medical guidance, we were able to stop one of the medications used to dry his secretions. Since then, his secretions and the number of times he requires suctioning each day have reduced significantly. For Rick, this means greater comfort, better sleep, improved recovery and a better quality of life. After completing the treatment, we welcomed Rick’s grandparents from Brazil to Italy. They stayed with us for three weeks, giving us precious time together. We also travelled to London for a few days, our first international family trip together in more than ten years. It was beautiful to explore a new city and create memories as a family. However, travelling with a child with complex medical needs is never simple. While in London, Rick struggled to tolerate his feeds. I had to replace his nasogastric tube and search local pharmacies for a different formula because he could no longer tolerate the one we had brought. After London, we spent a few days in Rome before Rick’s grandparents returned to Brazil. At the beginning of August, Rick’s condition suddenly declined. He had a seizure and appeared significantly unwell, so we were taken to Bambino Gesù Children’s Hospital. Following neurological assessments, no further seizure activity was identified. However, because Rick’s feeding tolerance had been declining for several months, we discussed placing a PEG feeding tube directly into his stomach. Doctors discovered that Rick had developed esophagitis and ulceration in his oesophagus, potentially associated with having a nasogastric tube for more than three years. When we arrived, I did not even know which hospital we were in. Through the help of many people in our social media community, I learned that Bambino Gesù is one of Europe’s leading children’s hospitals. Knowing that Rick was in such a highly specialised hospital gave me the confidence to proceed with surgery. Initially, I was told that the waiting time could be two to three months. However, after I spoke with the hospital’s chief and explained Rick’s circumstances during a meeting with eight specialists, the team expedited the procedure and arranged it within only two days. These are the true miracles of our journey: God opening doors we could never have foreseen and guiding us to a place where one of Rick’s long-standing problems could finally be addressed. I had never felt confident proceeding with the surgery in Australia. During a previous consultation, I was told that the surgeon had never performed the procedure on a child with Tay-Sachs and did not believe it was worthwhile because of Rick’s limited life expectancy. But Rick’s comfort and quality of life are always worthwhile. No one can predict the future, and I believe my child will live longer than the statistics say. Having this opportunity in Rome, surrounded by an experienced and compassionate team, felt like an extraordinary blessing. The first attempt to place the PEG was unsuccessful because Rick’s stomach was positioned too high for an endoscopic procedure. Over the following days, he received a different formula, additional hydration and regular abdominal massage. His bowel function improved considerably, and his stomach moved into a better position. The surgical team prepared for a more invasive laparoscopic procedure, but during the second attempt, they were able to place the PEG successfully through endoscopy. We believe the improvement in Rick’s bowel function following his REAC treatment played an important role in helping his body reach this point. This surgery can make an enormous difference to Rick’s digestion, comfort and wellbeing. Most importantly, it provides a safer and more sustainable way for him to receive the nutrition and hydration he needs. We spent nearly a month at Bambino Gesù while Rick underwent assessments, surgery and recovery. He experienced significant pain and required pain relief during the first few weeks, but once he was stable, we finally returned to Florence. Shortly after our return, Rick experienced another decline. We noticed unusual movements that appeared to be seizures, so we called an ambulance and went to Meyer Children’s Hospital. After two extended EEGs and neurological assessments, doctors confirmed that the movements were not caused by epileptic activity. They are myoclonic jerks, or myoclonus. Although it was another frightening experience, this information was incredibly valuable. We now understand the movements better and know how to keep Rick comfortable. Most importantly, the doctors advised that these jerks do not represent the same neurological risk as seizures and do not require anti-seizure rescue medication. We have now been home for approximately one week. During this time, we have carefully balanced Rick’s nutrition, hydration and bowel movements, and we finally seem to have found a routine his body tolerates well. He has been sleeping better and appears more peaceful and comfortable. We were even able to take him out over the weekend. After so many weeks inside hospitals, simply seeing him outdoors and sharing a gentle family moment felt like an incredible gift. Our journey in Italy has brought hope and meaningful improvements, but it has also involved unexpected hospital admissions, additional accommodation costs, emergency transport, specialist care, surgery, new feeding supplies and additional support workers to manage Rick’s increased daily and overnight care. Every donation helps us continue accessing the treatments, medical care, equipment and daily support Rick needs. By donating or sharing this page, you are helping give him greater comfort, more opportunities and the best quality of life possible. You are also giving me the precious gift of more time to create beautiful memories with my boy, without the constant fear of how I will afford everything he needs. Thank you for continuing to pray for us, support us and carry us through every chapter. While we were in hospital, I read your beautiful messages of love and encouragement and honestly, they made all the difference. Hospital stays are among the most vulnerable moments of this journey for me. Knowing that so many hearts were with us brought me peace during moments of deep fear and uncertainty. Your messages reminded me that God was taking care of us every step of the way, working through each person chosen to walk beside us. I truly believe that God works through people. So many doors have opened for Rick through the beautiful hearts surrounding us. Please continue to pray for Rick and keep us in your hearts. We love you all! Our army of love, fighting this battle alongside us. ❤️ With so much love and gratitude, Vanessa and Rick

The Healing Journey continues... Giving Him More Time, More Life English: Hi, my name is Vanessa, and I am the mum of Rick, the strongest little boy I know. Rick was diagnosed with Infantile Tay-Sachs disease at just 18 months old. At the time, we were told he had only 2 to 4 years to live. That moment changed everything. But Rick is still here. He turned 4 this year. And today, for the first time, we are not only fighting we are seeing hope everyday since he started on the REAC treatment at Istituto Rinaldi Fontani in Italy. In February this year, Rick completed his first cycle of REAC treatment in Florence and since then, something incredible has been happening. For the first time in years, instead of only witnessing decline… we are seeing progress. Through daily physiotherapy and occupational therapy, Rick is: Building real strength and stability in his body Becoming more present, engaged, and responsive Learning to bear weight with support using AFOs Spending meaningful time in his standing frame Breathing with greater ease, as he gains better control over his secretions through improved swallowing These are not small achievements, they are life-changing for Rick. We were told this would be impossible. But today, we are watching miracles happen, one step at a time. Beyond physical progress, Rick’s quality of life has changed dramatically: He is stronger and more stable in his body He has been seizure-free for months, after suffering up to 60 seizures per day in previous years His immune system has strengthened significantly He has had zero hospital admissions in the past 6 months, compared to 7 admissions in 2025 For a child who once spent so much time in hospital, this is life-changing. For the first time in his life... Rick is more comfortable. More peaceful. More present. And we see it in his eyes. In his smiles. In his strength. Why We Must Continue Now What we are seeing in Rick is something we cannot afford to lose. This progress has taken so much to achieve and it cannot be paused. For these improvements to continue, the treatment must be repeated consistently. Rick now urgently needs: ✨ Cycle 2 – July 2026 ✨ Cycle 3 – October 2026 These next cycles are essential to: Strengthen and protect the progress we are seeing through neuromodulation and cellular regeneration Continue improving his comfort and quality of life Potentially slow the progression of this devastating disease Give us something we hold onto every day: more time, more quality of life, more moments together The Reality: We Cannot Do This Alone Each treatment cycle requires international travel, specialised care, and weeks of stay in Italy. For these two upcoming cycles in one trip, we need to raise: $140,000 AUD This covers: Treatment cycles Medical travel, flights and insurance Accommodation Medical support and equipment Daily living and care costs As a single mum, full-time carer, and full-time worker, this is simply beyond what I can carry on my own. This Is More Than Treatment — It’s Time Every single day with Rick is a gift. This journey is not about a cure. It’s about comfort, dignity, stability And the chance for more time together. Time to hold him. Time to see him smile. Time to continue witnessing these small miracles that mean everything. Follow Rick’s Progress We are sharing Rick’s journey openly so you can see the impact for yourself. You can follow his daily progress through our socials on Instagram: Nena & Rick Highlights: “Progress 2026” and “REAC Tech” We are also sharing real photos and videos of his physiotherapy and development, so you can be part of every step forward. How You Can Help If you feel called to support Rick: Donate (any amount truly makes a difference) Share his story with others Buy a Rolling for Rick t-shirt through our Instagram (the store is currently in progress) Wearing the Rolling for Rick t-shirt is more than support, it helps bring visibility to his journey, to this treatment, and to what is possible. Our hope is that, one day, through awareness and community, this treatment can become more accessible and even be brought to Australia so more children like Rick can have the same chance. Every action matters. Every share expands his story. Every contribution brings us one step closer. From My Heart to Yours: THANK YOU KINDLY I have never stopped fighting for my son. Even when we were told there was no way forward, I kept believing there had to be one. And we found it. Now, I want to help open that path so more families can find this treatment, access healing, and give their children a chance at a better life. Now, for the first time… I feel like we are not just fighting against something we are actually MOVING toward something. Hope. Your support, your kindness, your prayers they mean more than words can ever express... they are bringing us together and that kind of strength and love expanded is where healing truly comes from. You are part of Rick’s journey, his progress and his new life. With all my love and gratitude, Vanessa & Rick _ Português (Brasil) : A Jornada de Cura Continua… Dando a Ele Mais Tempo, Mais Vida Oi, meu nome é Vanessa, e sou mãe do Rick, o menino mais forte que eu conheço. Rick foi diagnosticado com a doença de Tay-Sachs Infantil aos 18 meses de idade. Na época, nos disseram que ele teria apenas de 2 a 4 anos de vida. Aquele momento mudou tudo. Mas o Rick ainda está aqui. Ele fez 4 anos este ano. E hoje, pela primeira vez, não estamos apenas lutando, estamos vendo esperança todos os dias desde que ele iniciou o tratamento REAC no Istituto Rinaldi Fontani, na Itália. Em fevereiro deste ano, Rick completou o primeiro ciclo de tratamento REAC em Florença e, desde então, algo incrível vem acontecendo. Pela primeira vez em anos, ao invés de vermos apenas regressão… estamos vendo progresso. Através de fisioterapia e terapia ocupacional diárias, o Rick está: Construindo força e estabilidade reais no seu corpo Tornando-se mais presente, engajado e responsivo Aprendendo a sustentar o peso com apoio usando AFOs Passando tempo significativo no seu standing frame Respirando com mais facilidade, à medida que ganha melhor controle das secreções através da melhora da deglutição Essas não são pequenas conquistas, são transformadoras para o Rick. Nos disseram que isso seria impossível. Mas hoje, estamos vendo milagres acontecerem, um passo de cada vez. Muito Além do Progresso Físico A qualidade de vida do Rick mudou drasticamente: Ele está mais forte e mais estável Está há meses sem convulsões, após ter até 60 convulsões por dia em anos anteriores Seu sistema imunológico está significativamente mais forte Ele não teve nenhuma internação nos últimos 6 meses (comparado a 7 internações em 2025) Para uma criança que antes passava tanto tempo no hospital, isso muda tudo. Pela primeira vez na vida… Rick está mais confortável. Mais em paz. Mais presente. E nós vemos isso nos olhos dele. Nos sorrisos. Na força dele. Por Que Precisamos Continuar Agora O que estamos vendo no Rick é algo que não podemos perder. Esse progresso exigiu muito para acontecer e não pode ser interrompido. Para que essas melhorias continuem, o tratamento precisa ser repetido de forma consistente. Rick agora precisa com urgência de: ✨ Ciclo 2 – Julho de 2026 ✨ Ciclo 3 – Outubro de 2026 Esses próximos ciclos são essenciais para: Fortalecer e proteger o progresso que estamos vendo através da neuromodulação e da regeneração celular Continuar melhorando seu conforto e qualidade de vida Possivelmente desacelerar a progressão dessa doença devastadora Nos dar algo ao qual nos agarramos todos os dias: mais tempo, mais qualidade de vida, mais momentos juntos A Realidade: Não Conseguimos Fazer Isso Sozinhos Cada ciclo de tratamento exige viagem internacional, cuidados especializados e semanas de permanência na Itália. Para esses dois próximos ciclos na mesma viagem, precisamos arrecadar: $140.000 AUD Esse valor cobre: Ciclos de tratamento Viagem médica, passagens e seguro Acomodação Suporte médico e equipamentos Custos diários e de cuidados Como mãe solo, cuidadora em tempo integral e trabalhadora em tempo integral, isso está muito além do que consigo arcar sozinha. Isso É Mais do Que Tratamento — É Tempo Cada dia com o Rick é um presente. Essa jornada não é sobre cura. É sobre conforto, dignidade, estabilidade… E a chance de termos mais tempo juntos. Tempo para segurá-lo nos braços. Tempo para vê-lo sorrir. Tempo para continuar testemunhando esses pequenos milagres que significam tudo. Acompanhe o Progresso do Rick Estamos compartilhando a jornada do Rick de forma aberta para que vocês possam ver esse impacto de perto. Você pode acompanhar o progresso diário nas nossas redes sociais no Instagram: nena and rick Destaques: “Progress 2026” e “REAC Tech” Também compartilhamos fotos e vídeos reais da fisioterapia e do desenvolvimento dele, para que vocês façam parte de cada passo dessa evolução. Como Você Pode Ajudar Se você sentir no coração de apoiar o Rick: Doe (qualquer valor faz diferença) Compartilhe a história dele Compre uma camiseta Rolling for Rick pelo nosso Instagram (a loja está em desenvolvimento) Usar a camiseta Rolling for Rick é mais do que apoio, é dar visibilidade à jornada dele, a esse tratamento e ao que é possível. Nossa esperança é que, um dia, através da conscientização e da união das pessoas, esse tratamento possa se tornar mais acessível e até chegar à Austrália, para que mais crianças como o Rick tenham a mesma oportunidade. Cada ação importa. Cada compartilhamento expande essa história. Cada contribuição nos aproxima mais. Do Meu Coração Para o Seu: Muito Obrigada Eu nunca parei de lutar pelo meu filho. Mesmo quando nos disseram que não havia caminho, eu continuei acreditando que havia um. E nós encontramos. Agora, eu quero ajudar a abrir esse caminho para outras famílias para que elas também possam encontrar esse tratamento, acessar a cura e dar aos seus filhos uma chance de uma vida melhor. E agora, pela primeira vez… Sinto que não estamos apenas lutando contra algo, estamos caminhando em direção a algo. Esperança. O seu apoio, a sua bondade e as suas orações significam mais do que palavras podem expressar… Eles estão nos unindo, e é nessa união, nessa força e nesse amor compartilhado que a verdadeira cura acontece. Você faz parte da jornada do Rick. Do progresso dele. Da nova vida dele. Com todo o meu amor e gratidão, Vanessa & Rick