marc vittiglia-collins (aka blue-eyed hero)
Sadly on the 18th October 2018, gorgeous Marc Collins lost his battle with Lissencephaly. Our thoughts, love and prayers are with his beautiful family.
Words from Bec (Marc’s mumma).. “We are completely heartbroken for the loss of our blue-eyed hero. He fought hard and shone brightly for so very long. We miss you more than words can ever say and we will love you forever and always.”
Read Marc’s story ..
The SRBF provides Registered Nurse care, 1 day per week (for the last year) and has provided him with some pieces of equipment for his care.
When Marc was born on January 8th, 2012, he was a perfectly healthy newborn baby boy with blonde hair and big blue eyes. At five and a half months old, after failing to thrive and noticeable developmental delays, Marc was diagnosed with a rare genetic brain malformation called Lissencephaly (smooth brain)- sounds a bit like “listen carefully”.
Lissencephaly is a life limiting disorder. It is also a diagnosis that is forever changing and being added to. Lissencephaly, to date has caused Marc to have severe refractory (uncontrolled) Epilepsy, Microcephaly, Global Development Delay (GDD), Chronic Lung Disease, Dystonia, Dyskinesia and Cortical Vision Impairment (CVI). He is severely disabled.
Marc also has feeding difficulties which result in him aspirating when fed orally. As a result of this, he was fed via a nasal-gastric tube from the age of 11 months to two and a bit years.
In March 2014, he had surgery to insert a PEG/PEJ tube through a stoma (hole) that was surgically created in his abdomen. Since then Marc has been fed all his nutrition and fluid requirements through this PEG/PEJ. He must also have his multitude of various medications through it. At this point in time, Marc requires a cocktail of over 15 different medications and additional supplements.
A PEG/PEJ is an external double port through a stoma into his stomach that has a tube that allows fluid and medications to be administered into his stomach –Gastric port- and has a secondary tube that runs down into his Jejunum– Jejunum port- where his specialised formula is slowly administered continuously, over a 12hour period each night, via the use of a specialised feed pump.
In 2016, as a result of all of the anticonvulsants he is and has been on, Marc has developed an additional condition known as Nephrocalcinosis with Hypercalciuria- requiring more medication to reduce symptoms and prevent kidney stones forming.
Marc requires the continual care and support of many Specialist Consultants and their medical teams, allied health care professionals and most of all the loving 1:1 care and support from his family, 24/7.
At five years old, Marc is developmentally 3-6 months with some 12month old comprehension.
Marc has developed some strength throughout his legs and is working on his neck and torso control as well as his arm and hand control and coordination. This gives hope that one day he may sit, crawl or walk – however, this is still an unknown.
Along with his weekly Physiotherapy, Occupational therapy and Speech Therapy, Marc attends weekly and intensive blocks of physical therapy (CME MEDEK) with his Neuro Physiotherapist and we hope for him to also attend NAPA in February 2018. These intensive therapy sessions help to provide marc with cutting edge neurological and physical rehabilitation, in the hope of maximising his quality of life and giving him every possible chance to develop and build strength, coordination and control- opening up his world!
He has said some sounds like “Mum”, “Dada”, “No” and “Oh Yeah” which were miracle milestones for his family. However, these have not been said for a long time now and it is uncertain as to whether he will ever fully develop the ability to speak.
Marc’s family have the constant fear that his seizures may result him regressing and the very real possibility that he could lose the few skills he has worked so hard to acquire.
Regardless of all of this, Marc’s parents strive and give everything they have, to give him as much opportunity as possible to reach his potential- whatever that may be.
In the past five years, since his diagnosis, Marc has attended well over 500 appointments and countless hours with medical professionals and therapists. He has had over 50 hospital admissions with multiple Ambulance admissions to PMH ED and ICU.
His longest hospital admission to date was six weeks in 2014, in which he spent time in the ICU with two emergency surgeries.
Even with all of this, Marc is a happy and loving child with an amazing personality who love life and everyone in it. He is adored by all who know him and all who meet him fall in love with him and his big blue eyes and light blonde curls. He is our Blue-Eyed Hero!
Marc and his Mum, Dad and baby brother (Anthony) live in Perth Western Australia.
Each day they travel the roller coaster ride that is Lissencephaly. There are ups and downs and many an obstacle at times; but together they hold on tight and face each day head on.