Introducing our SHINING STARS

  • rehabME August 2022 is Adeline’s 3rd intensive therapy collective. We are incredibly grateful to the amazing therapists and the extended team who have been a massive support to Adeline and our family. We are extremely proud of Adeline’s efforts throughout each session and recognise the expertise and experience of Charlotte and Rachel as being the key to her successful and measurable progress that she has made in 3 weeks. Adeline has a rare neurodevelopment genetic disorder - SETBP1-Haploinsufficiency Disorder. #SETBP1

  • Aidan is an incredibly brave and courageous 12 year old boy who loves lollies and hot salty chips! He has a rare gene mutation on CACNA1A shank – he is the ONLY ONE in the world!! He is an incredibly happy boy, who loves making people laugh. He loves to try and be part of life and have fun. He enjoys watching Youtube Kids and playing with the family dog Chase.

    Aidan and his twin sister were born at 31 weeks and 4 days. We navigated the journey of the neonatal intensive care nursery and eventually bought out babies home 32 days later. I felt like superwoman. It was amazing to have our babies at home with us finally.  It wasn’t until we were at home that we knew that our son was in need of help. After years of medical testing, the diagnosis started to roll in. Aidan battles a complex neurological condition, along with moderate intellectual disability. He also has a vision impairment (intermittent left esotropia, nystagmus and low vision 6/12), Sensory Processing difficulties and emotional dysregulation, Hypotonia and balance related weaknesses, initial and middle insomnia, proprioception and interoception difficulties, episodic vestibular migraines, left side weakness, autonomic and mitochondria dysfunction, Stomatic Growth, Migraine Variable Epilepsy (Remission), medical anxiety and Thermoregulatory and Autonomic Dysfunction.

    The one that cripples him and our family is Medically Resistant Cyclic Vomiting Syndrome. Aidan requires 1:1 care and support to ensure that his safety and wellbeing are managed appropriately. He requires support and prompt medical attention to his 2-3 time per week chronic and debilitating vomiting episodes. Should the episodes not be able to be managed at home with his two lines of resume medication, he needs to be taken to Emergency and requires urgent IV hydration and medication (often includes sedation). 

    As a mum of three, and a husband who works fly in fly out, life was hard. I was exhausted. His older brother and twin sister were always missing out and life revolved around Aidan, vomit, clean up, hospital and episode recovery.

    We were fortunate to receive support from the Saba Rose Button Foundation by way of a support worker who would come two afternoon’s per week. She was able to attend to Aidan’s cares and support needs. This extra pair of hands was invaluable to our family. It provided an opportunity to allow his brother and sister to attend after school commitments without the prospect of not being able to attend due to their brothers medical complexities. It provided me an invaluable opportunity to take a break from my caring role.

    We will forever be eternally grateful to the friend who recognised how challenging it was managing Aidan’s complex disabilities and nominated for the support that was provided by SRBF. 

    We will be always grateful to the foundation and will continue to be part of the SRBF journey.

    


  • Ari, affectionately known as Ari Pants suffered a non fatal drowning accident at 3 years old and was left with devastating brain damage, changing his life forever.

    Against all odds, Ari is now a 14 year old young man. He is healthy and strong, loves a good action movie and flashing that killer smile.

    As an original focus star of the SRBF, over the past 9 years, Ari has been gifted many opportunities to grow, thrive and live his best life. Without the SRBF, Ari wouldn’t be where he is today.

    Equipment ,Therapy and respite just to name a few, SRBF have provided us with unwavering support and love.

    Ari and we as a family are forever grateful. 🤍

  • Caleb is a happy and loving young man who has a complicated medical history. He is known to us as the alphabet child.

    Caleb has a range of diagnosis and the list is never ending with CP, CCMV, epilepsy, Chronic Lung disease and that’s only a few. 

    Caleb is a frequent flyer at the hospital and he calls it home now and with appointments gets excited over a new bed. 

    With everything going on in his life he still tries his hardest in whatever he does even though his body doesn’t let him he still tries his best.

    His body seems to not like him some days as he can be fit and healthy one day and the next in hospital is fighting for life.

    His favourite thing is his older brother who is more like his best friend and therapist all in one

    He can't wait to attend Rehab with you once again to see all his friends and increase his skills in speech, OT and physio and be stronger than ever before!

  • Our beautiful boy Cooper makes us so very proud, day after day, smashing through all the challenges that life throws him. He LOVES going to school, going to therapy, spending time in the water, riding his trike, bouncing on the trampoline, reading, singing and most of all...lots of snuggles! He communicates with his PODD and device and is so clever, telling us exactly what he needs and we give him plenty of choices so that he's in control of making his own decisions. As a family, we love to go on hoildays and we are very blessed to have the most loving team working with us to care for Cooper.

  • Emmi is our gorgeous girl with the brightest and biggest smile that lights up a room - after countless tests and hospital admissions since birth Emmi was diagnosed with a rare genetic disorder called GRIN1 at 20 months. 

    It has been and will continue to be a hard journey for Emmi in a body that doesn't do what she wants and needs it to do. But we have fortunately been a part of the Saba Rose Foundation who have guided us and helped us in ways unimaginable. We have met our amazing therapists through SRBF and have participated in two rehabMe intensive therapy programs. Emmi was also a recipient of a grant through SRBF which will assist her future needs - we will forever be grateful.

  • This is our beautiful Emmi. She is 2.5 years old and was diagnosed late last year with an extremely rare genetic condition called Au-Kline Syndrome (AKS). This condition is characterised by significant gross motor delays, distinct facial features, intellectual disability, speech delay as well as hip dysplasia and heart abnormalities.

    Despite her diagnosis and the challenges she has faced in her life already, Emmi is such a happy and social little girl who wins over everyone she meets with her infectious smile and innate desire to make people laugh. She loves anything to do with water; bath time, swimming at the pool or beach and her weekly hydrotherapy sessions are her most favourite time of the week. She also loves listening to music and dancing around the house to The Wiggles, Moana or even Drum n Bass DJ sets on YouTube with her Dad.

    From birth, Emmi was suspected of having a genetic condition due to presenting with profound hypotonia and feeding difficulties and commenced early intervention therapies from 6 weeks old. Since then we have built an incredible team of therapists around her and we are so grateful for each and every one of them and the relationships they have built cheering Emmi on with every inch pebble or milestone she reaches. Progress has been slow and steady but In this last year we have seen huge gains, particularly in her communication. Despite being non-verbal she loves to sign, do the actions to all her favourite songs and show off her AAC device to all her friends at daycare - her favourite words are 'boring' and 'I want something to eat or drink' haha. Following major hip surgery last year she has also been working hard in OT and Physio and we love seeing her physical strength improve day by day to match that strong personality of hers too.

    Au-Kline Syndrome is a newly discovered condition and with only about 60 confirmed cases in the world, research and information is limited. It is hard to foresee what the future looks like for Emmi but we do know she is an extremely loved little girl and we will continue to give her every opportunity to reach her fullest potential and SHINE!

  • Mikey is an incredibly happy little boy, who is known for his hearty laugh and love of loud rock music.

    Mikey had a traumatic start to life. He was born 4 weeks early via emergency C section due to reduced movement. He arrived blue and not breathing, doctors thought it was too late. With a bit of help Mikey started to breathe and was rushed to NICU. Mikey was having constant seizures in NICU so he was transferred to PMH just hours old for hypothermic cooling. His body temperature was reduced to 33 degrees for 72 hours and then slowly warmed up.
After an MRI at five days old we were told Mikey had suffered a lack of oxygen in his final hours in the womb resulting in Hypoxic Ischemic Encephalopathy (HIE) – severe global brain damage. Within months Mikey received diagnoses of quadriplegic spastic cerebral palsy, epilepsy, microcephaly, hearing loss and global developmental delay.

    We started physio with Mikey right from NICU, we wanted to do whatever we could to help his little body move. We devoted hours of time to trying different types of therapies to help Mikey reach his potential. We have certainly learnt to never underestimate him as he is bound to prove us wrong!
Before NDIS we had to fund a lot of these therapies and specialised equipment ourselves which was extremely expensive. We really struggled to find the funds to give Mikey every opportunity to succeed.

    Mikey was selected as a Focus Star with the SRBF from 2018-2020. This was an incredible opportunity for Mikey and it elevated the pressure of finding the funds to provide Mikey with the therapies and specialised equipment he needed to keep kicking goals. During his time as a focus star Mikey had private physio sessions weekly with Triston Hunter and he regularly completed intensive blocks of therapy. He also received a treadmill to continue the work at home. The results were amazing! Knowing Mikey was able to continue to receive therapy that we could no longer afford meant a huge weight was lifted. I could then focus on learning as much as possible so I could implement the therapies at home.

    Our family was also incredibly grateful to receive in home support through the foundation. For the first time in our life we had trained professionals come into our home to support Mikey. It was overwhelming to have this help. With Mikey’s dad working away for long periods of time, it was hard to manage Mikey’s schedule and keep on top of everything else. Having help at home gave us a chance to not only get on top of everything but also recharge so we can be the very best parents to Mikey.

    We will forever be grateful to Saba, Kirst and Mick and the Saba Rose Button Foundation for supporting Mikey as a Focus Star. Those 2 years helped us all so much! Mikey achieved incredible milestones and we were relieved of the financial pressure of giving Mikey opportunities to grow and learn. 

    Thank you!

  • Morgan was born at 37 weeks after a terrible high risk pregnancy with him trying to come into the world many times. He was a tiny 2.5kgs and 46cms short. He quickly dropped in weight and we had an extended stay in hospital due to bad feeding and constant projectile vomits

    His first few months he spent a lot of time in hospital with respiratory issues mainly which eventually resulted in tests confirming aspiration. He was placed on thickened fluids.

    At 4 months things started to come to our attention that he wasn’t reaching for toys, he wasn’t making sounds or moving the way he should.

    During a hospital admission they noticed a single palm crease. I placed a post on a mums group and was contacted by a mum who said her child had Cdls and was missing the creases on her little finger…. We checked Morgan’s, yep his were missing too.

    I then googled… babies with monobrows! Cdls came up and tick tick tick one box after the next and it was like a dagger in my heart!!

    From then on the fight started! Pushing gp’s, paediatricians and genetics for referrals and tests.

    At 8 months I pushed for a clinical diagnosis in order to open up funding to start early intervention. He was placed on reflux meds and he was like another child!!!

    In his early years there were lots of hospitals admissions, surgeries, hours and hours of therapy and intensives.

    At 2 years old he was finally genetically diagnosed from a small sample of skin from his arm. It showed he was mosaic NIPBL, CDLS.

    It became very clear that Morgan would change peoples lives from the moment they met him. He fills the room with such a beam of light and brightens everyone’s days.

    He is absolutely full of character. Some of his biggest strengths is how social he is and his ability to draw people in with his amazing smile and humour and his need to please. He is very well loved and has sooooo many friends at school.

    His speech since starting at school has exploded and although still delayed he is managing to put 4 worded sentences together.

    He has spent the past two years at a mainstream school however next year we hope to move him to a more dedicated school for him.

    So we are currently going through an intellectual disability diagnosis.

    Morgan has a number of challenges with regulation, sensory, toilet training, expressive language, reflux, Perthes disease (hip issues) constipation, hearing loss, eye issues, developmental delay to name a few.

    However he is the happiest, cheekiest, charming little boy who will always find away to enjoy life and conquer his challenges. He has definitely changed our lives forever!!

    #cdls #cdlsawareness #raredisease #rarediseaseawareness #family #community

  • Nate is our very much-loved second child who was born with a rare genetic disorder called Trisomy 18. This is a condition that is caused by an extra copy of the 18th chromosome, which results with significant physical, intellectual and developmental disabilities.

    Nate’s story began before he was even born. Routine scans during pregnancy indicated that he wasn’t developing well, so further testing took place which identified his genetic condition. With this diagnosis Nate was given a very bleak prognosis by the doctors, they told us that Trisomy 18 was “incompatible with life”, not giving us much hope for the future. We were completely devastated when we received this news, it felt like our world and hearts shattered into a million pieces. Our dreams for our unborn second child came crashing down around us.

    But it seemed that Nate had other ideas because from the very start Nate defied what those doctors told us. He thrived during the pregnancy and was born with breath in his lungs. We were so totally in love with our wee little man.

    But sadly as Nate grew older, it became apparent that his Trisomy 18 diagnosis was affecting him. He wasn’t reaching the same typical milestones of children of the same age.  It was robbing him of the ability to do the simple things that many of us take for granted, like sitting, standing, walking, and talking.

    But despite all these challenges, Nate continued to be such a happy smiley boy, bringing so much love and joy to our family and lives. He is our shining super star, our super hero!

    As his parents we strive to provide Nate with every opportunity we can to help him reach his full potential. But we won’t lie, it’s an incredibly tough journey, and we acknowledge that we cannot do it all on our own, it takes a village to help us with Nate. From family and friends, therapists and medical staff, teachers and assistants at school, support workers who come to our home, and also the assistance we receive from others such as the Saba Rose Button Foundation.

    Nate was fortunate to be granted a RehabME Corporate Sponsorship with At Home Care through the Saba Rose Button Foundation.

    This sponsorship came at a time when we needed help more than ever. Nate was still waiting for National Disability Insurance Scheme funding, so he only had access to some very limited state funding for therapy and equipment, and no funding for support in helping with his significant daily care. Our family also became a Covid pandemic statistic with Leon’s employment affected, which resulted with financial stress for our family. And we were also about to welcome our third child into our family. In hindsight, not the most ideal timing!

    The RehabME Corporate Sponsorship with At Home Care provided much needed in-home support to help us with Nate’s ever-demanding care, which was a huge help when we had a newborn to care for as well. The sponsorship also provided Nate an opportunity to attend a RehabME intensive therapy program.

    At Nate’s RehabME intensive we focused on OT and Speech therapy in effort to develop Nate’s skill in using his newly acquired electronic communication device. And he blew us away with what he achieved! Nate developed the physical skills to use his device, and communicated on several occasions that he liked the toy that he was playing with, and wanted to play with it more. He also made selections using his device, choosing the next activity he wanted to do. This was the first time that he had communicated with such intent and purpose, telling us exactly what he wanted. It was phenomenal progress!

    And it just continues to grow from there. That RehabME intensive was like a key unlocking Nate’s ability to communicate, and it’s now paying huge dividends with Nate’s communication development.

    We are so incredibly thankfully for the support that we have received from the Saba Rose Button Foundation, it has given Nate opportunities to help him reach his full potential and live the best life he can. And that gives our family a glimmer of hope for our Nate, and for that, we are forever grateful.

  • The SRBF has been incredible in the support of our daughter Nina, who has an undiagnosed seizure disorder, along with our family over a number of years.

    From support with the donation of a P Pod chair, funding for support worker hours through “At Home Care” and sponsorship of intensive therapy through WA Charity Direct, Nina has reaped much benefit from being linked with SRBF. Her skills in communication have flourished from this support and our whole family are forever grateful for the gains she has been able to make because of the SRBF. The SRBF have helped Nina to find her voice!

  • Owen is our gorgeous 9 year old boy with a smile that would light up any room! The older brother to two more brothers, he’s the one that made us parents and proud we are of that!

    Owen was born with a rare genetic condition, a brain malformation called Lissencephaly which means his brain is smooth like a boiled egg. Owen is effected globally, and requires 24/7 care to live and participate in every day life. Owen is so loved by his family and friends and although he might not be able to tell those around him in the most conventional way, he fiercely loves those around him also 🤍

  • Scarlett is a beautiful 8 year old girl, with a heart of gold and love for life that can't be explained.  Scarlett has three younger sisters, who love her more than anything.  She is doing so well, and now goes to school up to 4 days a week.  She loves the outdoors, hydro, amusement rides, playing with her sisters, Frozen, reading books, and tasting yummy food like ice cream. She is starting to communicate with an eye gaze device, which has been life changing for her, and helped her express what she likes, dislikes, and wants to do.  We are all so proud!

    Scarlett still does physio a few times a week at Little Bodies, Ability Centre and Feldenkrais with Linda Hardey, and regularly attends Healthy Strides intensives.  She is thriving, physically healthy, and mentally happy, but still faces many challenges along the way.  Scarlett's seizures and movements are still problematic, and she regularly needs oxygen, suctioning, and chest therapy, but she never let's any of that stop her from living a happy and fulfilled life, full of the most beautiful smiles.

    Scarlett was really struggling a couple of years ago, with conversations with palliative care underway, but she has really turned a corner since then and thankfully we visit hospital a lot less now.  Overall is doing really well, and has the most beautiful support from Mum and Dad, sisters, and her team of nurses and support workers.   

    We love her more than all the stars in the sky, and are very grateful to the Saba Rose Button Foundation for their support during her early years (so important!) that helped provide me with breathing space and self care through respite, prevented postural deformities for Scarlett by funding therapy, and enabled equipment that supported her in her day-to-day life.  Forever grateful!

    Thank you again

  • Sophie is one of the O.G. RehabMe Allstars. She has Dravet Syndrome, a catastrophic genetic epilepsy. Sophie began having intense and multiple types of seizures as an infant. The most serious of her seizures is Status Epilepticus which is a type of seizure that won’t stop without medical iternvention. She has also been having these type of of seizures since she was a 10 month on baby. Because of her serious and refractory seizure disorder, Sophie has Global Developmental Delay and requires 24/7 care.

    Sophie was able to access Medical Cannabis for her epilepsy syndrome and since 2020 her seizures have become much more manageable, hospital admissions much less and her ability to get back in to therapy increased. We are happy to say Sophie is doing amazing.

    Sophie has been able to get back to regular Therapy sessions with RehabMe including Physiotherapy and speech Pathology and has participated in two rounds of intensives. Sophie is coninuting to work hard on her pelvic stability and unassisted sitting during her Physio sessions and using her Eye Gaze communication device with more confidence during her speech pathology sessions.

    We are so grateful to put part of such a beautiful community. Well done Saba Rose Button Foundation and RehabMe ❤️

  • Taj is a 9 year old boy living with quadriplegic cerebral palsy, after an acquired brain injury at the age of 6 months old.

    Taj is passionate about AFL, and is a fanatic Geelong supporter. His favourite thing to do is to play Starkick, an all-abilities football league that plays a modified version of the game. Taj plays in his wheelchair and has mastered the ability of rolling the ball down his leg to kick a goal (or 10!)

    Starkick has bought some incredible opportunities to Tajs life, such as meeting the Geelong team and playing at the half time game at Optus stadium.

    Nothing makes Taj happier than playing footy, and nothing makes his family happier than to see him thrive in an inclusive, supportive environment. You'll never catch Taj without a huge smile on his face when he's on the field, his incredible determination and resilience have allowed him to live out his dreams of playing sport and being involved in the game that he loves.

  • Tyler was our miracle baby but after a few weeks of him screaming constantly we started to realise something was wrong. At 4.5 weeks old he was diagnosed with a nueronal migration disorder, which means his brain never formed properly. This gives him epilepsy, vision impaired, cp, gdd, chronic lung disease and sensory issues. Through all his issues he is a happy boy who loves chooks, swimming, bubbles, trains and people.

    Tyler has amazing receptive language but has always struggled to communicate. We have been very blessed to be sponsored by the SRBF to participate in rehab me to do intensive speech therapy and explore eye gaze communication. This has been an amazing blessing to see him start communicating with his eyes to tell us go in car home, which he often said at each session and laughed about it. SRBF is an amazing organisation that provide opportunities to families who need extra support and can’t always afford them selves. It is also a great network to meet other families on the same journey.

  • Our story is one filled with many tears, pain, stress, and anxiety.

    It began at our 34 week scan when the sonographer had notice there was no visible corpus callosum, this started our journey.

    Victoria’s birth was short and beautiful; we greeted our baby girl with happy tears and joy. However, at her newborn hearing screen her right ear came up as referral, we then went to EARBUS when she was 9 days old to confirm her hearing loss, there we were told the devastating news our baby girl was profoundly deaf in her right ear. At 14 days old our sweet girl had an MRI to investigate the hearing loss and corpus callosum.

    During this time, we had so much happening - we where selling our home, our five-year- old, Michael, starting Kindy, having a newborn and zero sleep. Over the next few months, I developed a serve Post Natal Depression, and my anxiety kept me from dealing with what the future held for our daughter. With the endless appointments at PCH, therapists, doctors and pediatrician, Victor and I felt less like parents of a precious baby and more like carers. This blessing of our beautiful baby girl Victoria, her smile, sweet nature, and determination in life fills us with love and pride.

    Her Journey has continued to be filled with therapies (OT, Speech, Physiotherapy, Hippotherapy), six monthly Botox injections, major hip correction surgery (VDRO), hearing checks and just the continuous appointments. I am so grateful for the team we have Natalie Stehbens (OT, Bright Bunch), Abigail Ong (SP, Bright Bunch), Jen Nicholson (PT, Whole Human Therapy), SSENS Sensory teachers and Charissa Scotford (Hippotherapy, RDA Carine).

    At the moment, Victoria is getting stronger and stronger each day. Her beautiful smile and bright eyes get us through all the tough times together.

  • We had heard a few people say how beneficial an intensive therapy program was. But with Walts unpredictable health, and being in the early days of NDIS, travelling interstate for three weeks wasn’t really an option. Enter: SRBF. Walt was lucky enough to be sponsored for three weeks of Physio, speech, OT back in 2019. 

    We honestly didn’t have any expectations on what Walt would achieve. We weren’t sure what could even be possible. We live in the country, so unless we juggle school and driving to Perth for therapy, we don’t get to see the cool new things out there in regards to assistive technology and equipment, or see the highly skilled therapists as often as we would like.

    We were so excited to arrive on Day 1 and see all this brand new (to us) equipment. There were communication devices, switch toys, walkers, stand frames, trikes. We were able to trial a couple of different standing frames during the Physio sessions so that we wouldn’t have to worry about trialling one at home down the track. Walt was able to hop on a trike, while being safely supported for the first time in his life. What young boy doesn’t deserve a bike?! We were able to get justifications from the usage during the Physio sessions for Walt to get his very own trike. He loves being out and about through town, just like any other boy his age.

    During the OT and Speech sessions, the therapists realised that Walt is very capable of communicating. We were able to decipher that he was able to use his eyes and head movements to communicate yes and no. This was life changing! It completely opened up doors for Walt to have opinions, to have choices and to have some autonomy. We learnt through that just how much personality Walt had, just bursting to come out.

    We completed a second RehabME in 2022, which we were able to really finalise Walt’s communication device for the NDIS approval. The speech and OT sorted out the positioning of Walts head switches, and figured out what it is we needed for Walt to be able to communicate effectively using the device.

    Walt loves using his device, and impressing his school friends with his comedic timing (“You stinkers” is a real favourite!). Going into that first rehabME all those years ago, we couldn’t have even imagined that Walt would be riding around town on a trike, and using a communication device, and his body language, to tell us his thoughts and opinions. We are forever grateful to the SRBF team for opening so many doors for our Walt.

  • Zachary is our Superstar! Born at 33 weeks, he has defied odds and surprises everyone with his determination and persistence (not to mention his cheeky grin).

    Zachary lives with quadriplegic cerebral palsy.

    He thrives in therapies and excels in intensive therapy blocks.

    We are wholeheartedly grateful to the rehabME team for helping Zachary succeed in his journey.

    The sparkle in his eyes is the light of our lives. Zachary amazes us and brings joy to us everyday. He is our Superstar!

  • Five year old Zavier loves going to school, watching Bluey, playing in water, riding his bike and feeling the wind on his face. He’s famously known for his gorgeous curls and beautiful smile, often melting the hearts of all that meet him. Although he just goes about things with minimal fuss, it hasn’t always been easy for him.

    In February 2017 at just 6 months of age, Zavier started having seizures which turned out to be Infantile Spasms. Zavier was placed on prednisolone and anti-seizure medications to try and control the seizures. As weeks turned into months the seizures continued to grow in frequency, severity and different types, with anywhere between 50-150 seizures being recorded each day. It took 6 months of prednisolone treatment before the overactive discharge in his brain subsided and another 12 months of trial and error of anti-seizure medications before Zavier’s seizures were more controlled. During this time the prednisolone caused Zavier to gain excessive weight which restricted his movement, and the seizures caused him to obtain severe global development delays.

    By 18 months of age, Zavier had extremely underdeveloped communication skills, very poor fine motor skills and wasn’t even able to sit up on his own, let alone crawl or walk. He also developed a severe distrust of anything going near his mouth and would refuse to eat for extended periods of time due to the vile taste of the medications. Giving him medicine became very traumatic for him and us so Zavier received a nasogastric tube to assist and later a PEG to which he still has today.

    Zavier’s first NDIS plan only provided him with 67 therapy sessions over a 12 months period which was to be alternated between occupational, speech and physio therapies. He also received a specialised stroller with foot straps to assist and correct his physical growth. We knew this wouldn’t be enough so sought assistance to pay for extra therapy sessions with physiotherapist Triston Hunter, who specialises in Cuevas Medek Therapy. We did this through a GOFUNDME page with the assistance of The Midland Reporter and the Channel 7 News Team.

    In March 2018, Zavier started weekly therapy with Triston. Within the first couple of months he could push himself into the sitting position, balance and correct himself, and was interacting more with his environment. Unfortunately however, his progress was often hindered because whenever a cluster of seizures came back, he would lose most of what he had just learnt and we would have to start again. For this reason, Zavier’s paediatric neurologist agreed to give CBD Oil a try in conjunction with his anti-seizure medications. Within the first couple of weeks of starting the CBD Oil, Zavier’s seizures reduced significantly, but the cost was extremely high. Because it had proven to be successful we decided we would have to use the GOFUNDME donations to pay for it instead of using it for therapy. We explained the situation to Triston and she referred us to the Saba Rose Button Foundation who generously sponsored 15 sessions of physiotherapy. This is where our journey with the Saba Rose Button Foundation began.

    Over the past four years The Saba Rose Button Foundation has sponsored Zavier to receive necessary therapies through their Rehabme Intensive Collective programs which has provided Zavier with blocks of daily intense therapy to help boost his overall development. They have also generously donated his specialised bike and other vital equipment we otherwise would not have obtained.

    More recently Zavier has been diagnosed with cerebral palsy because of the brain trauma the seizures have caused but despite what Zavier has had to endure and continues to endure, his personality grows bigger and more beautiful every day. The regular therapies Zavier receives is making him stronger all the time. He’s a little fighter and an inspiration to his whole family but one thing we know for sure is that he wouldn’t be where he is today without the ongoing love, support and generosity of The Saba Rose Button Foundation, and we will be forever grateful to them.