Sebastian's Kidney Disease

Hi, welcome to our page, a page we (Rebecca & Justin) really wish we did not need to set up or share publicly…..This campaign is dedicated to trying to raise some funds to assist in helping our 22-month-old son, Sebastian, who was born with end-stage kidney failure. He now needs dialysis and a kidney transplant. We are seeking support for Sebastian and our family as we navigate this difficult journey together. Below is a summary of our story, so far. If you would like to follow Sebastian’s journey through dialysis and hopefully a future transplant, some details will be shared via our brand-new Instagram account: @SebastiansMCKD.

Before we get into the background about how we got here, we wanted to share that as we continue to support Sebastian through this challenging journey, we are hoping to raise some funds. Unfortunately, despite trying to access current available concessions and payments to help cover some of the mounting costs partially associated with his medical needs, it appears we do not qualify for Centrelink or other government concessions due to his young age. Your support would mean the world to us as we work to provide him with the care he desperately needs through any funds raised via this campaign. Sebastian’s care is extensive and comes with many associated costs for his complex medical condition. Part of the costs associated will continue to include travel to and from his appointments, the expenses of running dialysis machines at home (10-12 hours a day), his medications and everything else needed for his treatment plan. As you can imagine with caring for a loved one, I have already had to take a great deal of time off work and potentially may have to stop work indefinitely in the future to look after Sebastian, it will all depend on how he responds to the dialysis and, hopefully, a future transplant.

Background: At just 24 weeks gestation in 2022, the Sonographer identified through a routine pregnancy ultrasound that there could be a problem with our baby’s development of his kidneys. At this time, coordinated by our local OBGYN in Ballarat, rural Victoria where we live in Australia, we began liaising between our local OBGYN & local hospital here in Ballarat and the team at the Royal Women’s Hospital in Melbourne, Victoria.

Following the identification of an issue, the appointments and tests became more frequent, some daily, some weekly and others fortnightly. The tests revealed a very rare kidney disease and we received the devastating news about our baby. Our baby was diagnosed with Bilateral Multicystic Dysplastic Kidney (MCDK), a rare and life-threatening condition where both kidneys are replaced by cysts, leaving them unable to function. We were told that MCDK is almost always fatal. Babies born with this condition in both kidneys often do not survive long after birth. For the few who do, survival means enduring intensive care and long-term dialysis until a kidney transplant becomes possible. We were told to prepare for the unthinkable—the worst outcome any parent could imagine.

Sebastian was delivered via emergency caesarean at 37 weeks, with many medical specialists anxiously watching updates about his birth via computer screens. We were told that due to his diagnosis in utero that he may not be able to urinate and given that I had next to no amniotic fluid, potentially his lungs were also not developed, even with Steroid injections. Then, something incredible happened—a miracle in that moment, against all odds, Sebastian cried and urinated almost immediately after being born, within minutes! As parents, we have never been so happy to hear that a baby of ours has had a wet nappy! The room of specialists erupted into cheers, a sound of pure joy and hope from the medical teams who had prepared us for the worst. It was a glimmer of hope for us all—a sign that our little fighter was determined to defy expectations. Much to our surprise, and to the surprise of the medical teams from the Melbourne Royal Women’s Hospital Maternal Fetal Medical Unit and the Melbourne Royal Children’s Hospital Nephrology Unit, our son Sebastian has defied all odds. Despite needing care in the NICU and Special Care Nursery after birth, due to the severity of his condition and requiring assistance to breathe and feed through a tube, he fought so hard to stay with us. He continues to receive specialised care including a complex medication regime, which involves iron infusions that Sebastian has to have due to iron supplements causing other negative impacts to his body. Through the dedication of medical specialists both in Melbourne & Ballarat, Sebastian has blossomed into the beautiful toddler we are so grateful to have with us today. His medical and care teams include but are not limited to all of the Doctors, Paediatricians, Nurses, Pathologists, Medical Scientists, Dieticians, Phlebotomists, Laboratory Technicians and Assistants, Clerks, Administrators, Pharmacists, Physiotherapists, as well as the cleaner’s and kitchen staff and all the other hospital staff involved in his care at birth and ongoing.

Living in regional Victoria, most of our appointments have been in metropolitan Melbourne, driving from our house to the hospital in Melbourne in good traffic takes about 1.5hrs, over 2 hours if we have to travel during peak times, which we often do, to be able to make early morning appointments, this doesn’t include the time taken to do the return trip. Starting these appointments early in pregnancy and continuing on through his life. The travel expenses, parking costs, overnight accommodation, loss of income, combined with the costs of medications, specialised formulas, and medical equipment, have meant that we have completely drained our savings. The ongoing management of Sebastian’s illness will continue to affect our family for his entire life, including financial strain. We are in desperate need of assistance to ensure Sebastian continues to receive the care and support that he needs, as there is no cure for kidney disease, only treatment options.

Kidney health is vital to every part of the human body, and Sebastian has continually amazed us all. Despite his early challenges, he has slowly learned to crawl, then walk, and eat solid food. He has even developed a beautiful love for music. Although he is a medically complex child with kidney disease NDIS does not cover the costs of his medications to support his kidney health. Sebastian has been diagnosed with global developmental delay and failure to thrive. Despite all of this Sebastian is a happy little soul, doing his very best with the invisible challenges he faces every day.

Recently, while recovering from surgery myself, we received the heartbreaking news that despite all our efforts, and believing Sebastian was stable with his medications and care; he now urgently needs to begin peritoneal dialysis. This treatment is complex and intensive. At a minimum, it will require a prolonged stay at the Royal Children’s Hospital Melbourne, followed by frequent trips back and forth from our home to the hospital in Melbourne for the foreseeable future. At the same time, we found out that due to his kidney disease preventing his ability to grow at a usual rate that he will need to begin hormone injections 6 times a week. These injections are to try to support his growth. Growth in the early years of life is so incredibly important and his kidney disease hinders his ability to grow at a typical rate.

It is important to know and for us to also share about kidney disease to help educate others who are interested. Dialysis is not a cure; it is a temporary measure, a lifeline for those with kidney disease. Our greatest hope is to help Sebastian grow big and strong enough to receive a kidney transplant and enjoy the brighter future he so deserves.

By sharing our story here and on Sebastian’s Instagram, we hope to not only raise the funds needed to support our family during this difficult time but also shed some light on kidney disease and how severe it can be. Your kindness, prayers, and support mean the world to us. Together, we can give Sebastian the chance to grow, thrive, and live a full life.

If you would like to know a little more about our journey to becoming parents and having our little family, please continue to read through:

My husband (Justin) and I have been together for nearly 20 years, dreaming of the family we now cherish. But the path to parenthood has been anything but easy. After years of trying to conceive, we discovered that I, Sebastian’s mum (Bec), had severe endometriosis, which required surgical treatment. This heartbreaking diagnosis meant infertility, and our only hope of starting a family was through IVF.

During our IVF journey, life threw us another curveball—my husband, Sebastian’s father, was diagnosed with cancer. Thankfully, he underwent surgery and treatment, made a full recovery, and is now in good health. However, this meant we needed IVF combined with ICSI to have a chance at building our family. IVF is a deeply emotional, physically taxing, and financially draining experience, but it was worth every step.

After many failed attempts and heartbreaking pregnancy losses, we were blessed with our eldest son, Samuel. He is now 8 years old and an incredible big brother. Samuel’s love and resilience inspire us daily, but as a neurodiverse child, he faces his own unique challenges. We never thought we would be able to have another child, but to our surprise, after further pregnancy losses, we were lucky enough to conceive Sebastian, to our shock, naturally without IVF, something we never ever dreamt was possible for us, we were told we had a less than 1% chance of ever being able to fall pregnant without assistance. We finally had a little baby brother for Samuel. Samuel had begged and begged to have a little brother or sister for years, even asking Santa to bring him a baby brother or sister for Christmas one year. On top of this, Sebastian’s medical needs often mean Samuel misses out on typical childhood experiences including play dates at friend houses, attending birthday parties and the like. It is hard for him to understand why things are different for his brother, why mum sometimes has to leave in the middle of the night, or why we spend days on end in the hospital and do not get to enjoy family holidays and trips like other kids his age. After Sebastian’s birth, we were told to isolate and not expose him to others outside of our immediate family due to the severity of his condition. A minor sniffle for medically typical people meant we would be hospitalised for days with Sebastian, not knowing if his body would cope and be able to survive the infections. The first year of Sebastian’s life was very isolated for us all, especially Samuel who struggled not being able to see his family and friends as often as we usually would due to his brothers’ health.

Our roots are in Ballarat, where we have built our life together. My husband was born here, and I moved here in 2001. It has always been our community, our home. Despite the challenges, we’ve faced each one with love and hope, doing everything we possibly can for our two beautiful boys. Sebastian’s journey has added complexities we never imagined, but it has also shown us the depth of our strength and the power of love.

Recently, my husband lost his job, adding yet another layer of stress to the immense challenges we already face in caring for our children. We have always been the kind of family that offers help rather than asks for it, lending a hand to friends and loved ones in need without expecting anything in return. Even before having children of our own, we were regular supporters of charities such as The Good Friday Appeal and Ronald McDonald House. We never imagined that one day, we would need these services ourselves. Feeling completely overwhelmed we have created this page, fully aware of how much we need help to give Sebastian the best possible change at a brighter future, something we just cannot do alone anymore.

If you have made it this far, thank you for taking the time to read out story. We are deeply grateful for you reading through and appreciate any way you choose to support us – whether by sharing our cause through this page or Sebastian’s Instagram. Offering a prayer or positive thought, making a donation (we especially appreciate this given the current climate and challenging economic times for people), or simply spreading the word about his journey.

Sincerely, from the bottom of our hearts, thank you for your kindness and generosity. It truly means the world to all of us - xo