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Ben's Bone Marrow Transplant

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25.01.2022 4 months today since Ben was taken away from us, we miss you terribly. This little clip is from Ben to all of you for the love and support during his battle. May everyone be blessed with good health, love and peace. May nobody ever be separated from their loved ones when they need it most. Compassion - There is always a way (Thanks Ash for the clip ) https://www.youtube.com/watch

25.01.2022 1 week ago Ben left hospital and ever since has been cared for by Mum, dad and extended family. He is looking better and stronger everyday. Seeing him smile brings a lot of joy. Everyday Ben has to push himself to do basic everyday tasks with pain that is hard to control. What I can say is his needs are being met. His physical and mental heath is slowly improving. Due to the COVID risks & current restrictions with Covid, here in Melbourne, not having a carer available shoul...d Ben need to be in hospital is not a risk we are prepared to take again. We are currently looking into re-locating Ben back to Sydney. The logistics and stress of coordinating this alone is a hard task but the benefits outweigh the negatives. We are trying to source a property close to St Vincent’s hospital so that we can be close to the doctors and medical treatment if need be after isolating is complete. Fingers crossed we hope to all be back in Sydney by the end of next week. Rose, Don and Ben will have to quarantine in a hotel with Bens medical and accessible needs being met. Russell and I will finally be out of lock down in 226 hours. Yes I’m counting. Thank you for all your beautiful supportive comments. Knowing your praying, thinking, wishing and sending positive vibes is a comfort. Xx. Stay safe everyone

24.01.2022 Last night you visited me and some of those close to you in our dreams, yes, it’s been 2 months since God said suffer no more. But our suffering continues. They say time helps, but for us time gets harder. We’re just not there yet. I haven’t forgotten our promise to you my son, I am advocating slowly and silently (for now). They had no right to stop us from comforting you in your final days. You deserved so much better, We love you Ben https://www.change.org/p/daniel-andrews-change-icu-visiting

24.01.2022 Russell and Rose are still in quarantine in Sydney. They tried to get an exemption however, no luck. Donald and Virginia are doing the legwork. Alex is doing their best to move forward. We are all doing our best to prepare Ben to be layed to rest. Many things are difficult as most things are done via zoom or tele appointments. We have family and friends helping us with with some aspects that are difficult to do from quarantine. Ben will be laid to rest on the 23rd of Septemb...er at 2pm. Due to Covid the service is restricted to 100 and we are At capacity. There will be a link available shortly, for those who wish to attend via live stream. We struggle every day trying to not think about how Ben felt alone in that Hospital bed for 4 days ... our anguish is at times unbearable. All we can do is honour Ben and keep advocating for others to have a better outcome. We love you so very much Ben. We are so grateful to so many people for dropping food, meals, flowers to us. Rose was able to create a memorial tribute to Ben while in quarantine. And the endless love via messages, phones etc.. We are feeling the love and support. God bless and stay safe See more

24.01.2022 #Run4Refugees Russell, myself and Ben's 2 step-siblings joined Ben on this fun run back in 2016. Ben never missed an opportunity to support people in need. Nothing but

21.01.2022 And here we are, faced with do we go to hospital without a carer at the cost of our mental and physical health. Or do we keep Ben at home and risk his life. Ben does not want to be admitted because of the current hospital system’s blanket rule policy. And how do we live with ourselves either way? I honestly don’t know how to live in this current covid hospital climate I took Ben to hospital today because he simply wasn’t doing very well. I told them his breathing was ...laboured but Ben told them it was the mask. He told me when we got home that it wasn’t the mask, he was too frightened that he would be admitted without a carer. I am so angry, so sad, so alone. That no one within the hospital/health system is hearing us. Every time we ask for a carer to be with Ben we get a standard first line response. We know it’s frustrating, but...... well it’s not frustrating, it’s cruel, sad, heart breaking and inhumane. The nurses can’t care for Ben with his high needs. A carer needs to be with him. They need to change the rules!!!! Help us to help our son... sign and share https://www.change.org/p/daniel-andrews-change-icu-visiting

21.01.2022 They need to allow carers to look after their loved ones. thanks to #sunherald for the support

20.01.2022 Rare disease advocate, Andrew Bannister, has once again led the way on the illumination of landmarks around Australia for 2021 Rare Disease Day! To date, Andrew... has organised for over 60 landmarks to be illuminated globally take a look at the poster to see which landmarks are being illuminated locally near you in Australia. Help us to spread the message by hitting the and Share buttons! Rare Voices Australia thanks Andrew for all of his hard work and dedication! You can learn more about Andrew’s personal story here: https://bit.ly/3tj22y2 #RareDiseaseDay

19.01.2022 Ben's days are hard and we are so grateful to be taking care of Ben at home with the help of Hospital in The Home provided by The Alfred Hospital. Transferring Ben to Sydney is proving to be quite challenging and we have to be prepared for the possibility of needing to remain here in Victoria. We, therefore, need to keep advocating for change. The current guidelines do not allow a carer to be present if Ben should need to be hospitalised. Ben needs full-time care and nurses just don't have the capacity to do this. Please keep sharing our petition so we don't have to go through the anguish of separation, isolation, and the inability to provide basic human dignity for our son. No family should have to go through this, we know there are many other families who are suffering. https://www.change.org/p/daniel-andrews-change-i/u/27590239

19.01.2022 A touching tribute to our beautiful Ben from Pride of our Footscray.

19.01.2022 Please see below the live stream link of Ben’s Service this Wednesday at 2pm. The link will be active 10 minutes prior to the service. If you have trouble accessing once you click the below you may need to enter the following information. Click on Picture below... Event ID - HansencoleKG Password - NIXYGY Any further problems logging in, may I ask you only contact Hansen & Cole on 024272 4900. Take care Virginia xx https://www.oneroomstreaming.com/view/

18.01.2022 After 15 days we finally are able to see our son. The hospital never allowed Ben a family member, carer or support person to be with him during this ordeal. Bens condition was/is rare and complex. With his neuropathy he required round the clock care to eat shower and walk. The nurses are unable to provide Ben with 24hr care as they have limited time with many patients. Mental health is hard to stop once it’s in motion and we were unable to get the help for Ben while in hospi...tal. Ben has chosen to leave the hospital and we will continue his medical treatment from a home hospital. With the help of family in Melbourne (Aunty Lou and Uncle Tony) we are able to have Bens treatment continue without the barriers that covid has created. For everyone involve it is stressful and disturbing to not be allowed to be with a loved one during any time when they are unwell. The system needs to change and we will continue to campaign for the health department to change the current protocol in hospitals. No one should have to go through this alone. If you haven’t signed our petition please do and if you have please share it. This pandemic is here for an unknown time and more families will suffer. Ben is happy to see Mum, Dad, Russell and I (Virginia). Ben is staying with family. His partner, Alex will be able to visit him for the first time in 20+ days which will help with his recovery. The restrictions in Melbourne are something we must adhere to and while Ben maybe out of hospital we can’t let others visit to protect Ben and his Aunty and Uncle. We are far from out of the woods but we are always positive Bens health will improve and god willing, we can get him stronger everyday. Don’t ever take for granted time with your family or a simple walk in the park as life guarantees nothing. Thank you for everyone’s prayers, love support and generosity. We owe a few special people in Melbourne a big thank you and their act of kindness has made our stress easier to deal with. We have made life long friends. Pay it forward We are blessed and are looking at goals to get Ben moving in the direction. https://www.change.org//cl_sharecopy_2397320/0/1139242845

18.01.2022 Please consider being a donor. Whilst we are forever heartbroken that our beautiful Ben did not survive. We are forever grateful to the anonymous donor who selflessly gave her stem cells to try and save our Ben. We can save lives, please consider being a donor Fly high our son, until we meet again (I cannot wait)

18.01.2022 On Wednesday we farewelled our beautiful and amazing Ben. We are all still coming to terms with our undescribable loss. We want to thank so many people for reaching out to us and supporting us. We are truly overwhelmed by the love and support. Jane lovingly and tirelessly made and hand cut Ben's favourite tattoo on candles that were placed beside our Ben for love and light. Alicia , Danielle and Tegan worked tirelessly on the photo memorial during the service and afterwards a...t the Wake. Roza, Helen, Crystal, Carni, Mary, Tena & Pauline provided the floral arrangements for the service. There was a combined effort to set up the memorial table for the service. Noah & Adam for organising Ben's artwork and photos, and our dear Wade, friends and partner for organising the Balloon tribute at the wake and so much more. Bella @ Beehive for artwork. Lillian for an amazing service. There are so many people who have helped us along the way, including our partners. We simply can't name you all, but you know who you are and we are forever grateful, it has shown us that there is so much human compassion still left in this world. For those who viewed the service, we have attached the "Order of Service" which explains the relevance of music chosen for the service. All these songs had special meaning to Ben and to those close to him. With love and gratitude Donald, Rose Alex and Family See more

16.01.2022 We are so proud of Cindy and her family. Cindy's family are all affected by CGD, her oldest son Colton, 22 has had a lifelong battle with infections. We met each other in the States when Ben was being treated at the NIH. Cindy and Colton spoke with me a few days ago and they both told me how inspired they were with Ben's story that Cindy is now advocating for changes and to support anyone affected by CGD. They recently completed a walk in support of the Immune Deficiency Foundation. This provided me with great comfort, knowing that Ben's journey is helping others. https://www.walkforpi.org/detroit/cindyteicher

13.01.2022 One month ago you were taken from us. The heartache is unbearable. We are still advocating in your honour. Your dear friend Maureen has been working in the background so other families don’t suffer as we did. You are loved by so many. I still reach out for you my beautiful Benny Boy Please sign and share https://www.change.org/p/daniel-andrews-change-icu-visiting

13.01.2022 This is what Ben was all about...Ben loved his Cafe and loved helping others @ Delta Catering. God must have needed more good people up there in Heaven. I hope there are lots of ducks up there for you to enjoy, our beautiful and amazing son

11.01.2022 Ben is from Melbourne and we are from the Highlands and the Illawarra which in the current environment makes visiting extremely difficult. Thank you for your kind words and we are feeling every bit of support xxx

11.01.2022 Ben was farewelled surrounded by lots of love in Melbourne yesterday with a small and beautiful funeral service for his partner Alex, his Great Aunty and their families (10 in total). Ben has arrived home to NSW today and is awaiting us coming out of isolation so we can say Farewell to our beloved Ben. We wish we had our family with us to take comfort. Nothing has been normal. We are so grateful to so many beautiful people who are helping us through this difficult time. Thank you Ash, Jessica, Virginia and Alicia for the drop offs. We are humbled We miss you Ben, our hearts are broken

10.01.2022 At Pride, we welcome everyone of goodwill and say, "Be Yourself, Have Fun!". People should be allowed to be themselves. If someone identifies as heterosexual, h...omosexual, transgender, bi, pan, non-binary, whatever they may, that is their business. Life is never easy though, so people need to be supported in their journeys. In the spirit of this, today is "International Coming Out Day". . International Coming Out Day is an annual LGBTIQA+ awareness day observed on October 11, to support those "coming out of the closet". . First celebrated in the US in 1988, the initial idea was grounded in the feminist & gay liberation spirit of the personal being political, and the emphasis on the most basic form of activism being coming out to family, friends and colleagues, and living life openly. . The belief is that fear & prejudice thrives in an atmosphere of silence & ignorance, and that once people know that they have loved ones who identify differently they are far less likely to maintain oppressive views. . Here's a song to mark the occasion. And love to everyone! https://youtu.be/zbYcte4ZEgQ See more

08.01.2022 For you our son. We fought so hard to be with you. Our anguish is 10 Fold for denying us to be with you during your last days. You did not deserve to die amongst strangers. You should have been surrounded by our love, our touch, our tears. They allowed us into ICU when it was too late. There is no justification for this. We love you Ben, we fought for you. Please sign and share the petition in honour of Ben we will send this to the premier once it reaches 10,000, so that other families do not suffer the same anguish. We thought we had more time https://www.change.org/p/daniel-andrews-change-icu-visiting https://www.dailymail.co.uk//Family-battled-visit-dying-so

07.01.2022 You might know how to wear a #mask safely but do those around you know how? A few do's and don'ts on wearing a non-medical #fabric mask safely. #FabricMasks #Health #Safety

06.01.2022 Please, in honour of our beautiful son. Sign, if you haven’t and if you have share and ask others to sign it. It’s too late for us but not for others. This was cruel, inhumane and no logic behind their decisions. We have sent this petition to Dan Andrews but no response. I guess we are just not important enough. But if it was his child dying, I don’t think he would be sitting at home, forced to separate and not be by their side. https://www.change.org/p/daniel-andrews-change-icu-visiting

05.01.2022 It is with unbearable sadness we tell you Ben passed away just before 1am today. There was no time for us to say goodbye, they denied us that . Ben died peacefully with his mother, Rose, Aunty Lou and partner Alex by his side. This is our darkest day, our worst fear. He fought this medical demon right to the very end with courage, strength and compassion for those around him. Ben kept surprising us by always defeating the odds and pulling through. His open and honest attitu...de, strength and determination is what made Ben great. Especially in the recent months when he was facing relapse. His way of coping with these difficult moments of his life always gave us hope he was going to beat this. That will never be and we are left with a numbing emptiness that feels like there is no end date. Pain can no longer find Ben now and that is the only comfort we have. He can reach the stars and be free to do what he likes. Our beautiful talented young man has been taken, way too soon. We are grateful for all the medical teams here in Australia and the US. Working under these conditions are difficult at best but no one saw what this year has brought. We are further saddened that nobody was given access to be by Ben’s side during his last days. On behalf of Rose, Donald, Russell, Ben’s partner Alex, Ben’s brothers, Adam and Noah, Nannu, Nanna and Bens Nanna in Malta we are so grateful for your love and support. We were never alone by you, we are overwhelmed with your kindness and support. It was an honour to know Ben, anyone who had the privilege knew they were touch by a genuine and beautiful soul. He will always be in our hearts. Our Benny Boy, Ben Ben, Benji and Benjamin (when he was in trouble) Virginia xx

04.01.2022 Veer's call for a matching stem cell donor is NOW URGENT! Please help us SAVE our 4 year old boy. Veer needs his transplant NOW and is running out of time to find his perfect match! Please visit www.helpveernow.org TODAY to REGISTER and please SHARE this video. Thank you so much.

03.01.2022 We have some great news, Ben has been transferred to a general ward. We are so very grateful that he has once again defied the odds, Ben's condition is fragile but we are positive and hopeful that Ben will make a full recovery. We continue to struggle to have access to Ben. Ben falls within the guidelines of the hospital's website for visitation as Ben has complex medical and mental health issues. The nursing staff is just too overwhelmed to be able to give Ben the care that ...is required. We have always been there to provide the extra care, which we are now not able to provide. Ben was placed in an induced coma twice in 5 days and has had to recover and come to terms with this without any family presence. It breaks our hearts. Ben needed immediate mental health assistance today and the system failed him. There needs to be a safe environment where a family can visit their loved ones in hospital, especially those with complex issues. Thank you to everyone who has signed the petition. Please keep sharing it, we need to create change, not just for us but for all those families going through the same anguish. Prayers are always welcome. https://www.change.org/p/daniel-andrews-change-icu-visiting

03.01.2022 Our beautiful, amazing Ben has been honoured with Tattoo tributes. Ben would be proud as punch up there in heaven ... Forever 28, Forever loved and adored. Tattoos or not #ashtattoos #withusforever

02.01.2022 It’s with sadness I’m writing this post, Ben is back in the ICU and on life support. I don’t know much else because on Sunday I suffered an emotional/mental breakdown. Ben’s father has taken over the care of Ben, I am putting all my energy into resting and praying until I am stronger. For those of you who reached out to me and most likely saved me I am so very grateful. For the people I hurt, I am truly sorry. Yesterday I felt an abundance of shame. Today I am forgiving mysel...f and trying to find acceptance in this decision to not allow family/carer presence. Tomorrow I will continue to advocate to be with Ben. Finding acceptance doesn’t mean giving up. At the moment Ben is responsive to Dr’s when they ask him to squeeze their hand. I want me or his father or his partner to be the hand that Ben squeezes. Ben deserves to be surrounded by love. The rules around hospital covid restrictions has had a detrimental affect on mine and Ben’s mental health. It’s unbearable to go through this without being able to hold our son’s hand. Please pray for Ben and for his family (mum) See more

01.01.2022 #bethematch more donors needed. CGD is a cruel affliction. Praying for little Jordan Be a superhero and consider becoming a donor