My name is Samuel Jesse Amiet and I am 7 years old. I have been diagnosed with: Cleft Palate, Gastrointestinal-Reflux, Cerebral Palsy, Epilepsy, Perthes Disease, DNA Repair Defect, Global Development Delay, Intellectual Disability, Anaemia, Speech and Communication Delay.
This is my story: “I was born a little early in June 2009 and besides being very small everything seemed to be ok. That was until I was 3 days old, my Mummy and Daddy knew something just wasn’t right. After a whole day of tests, it was found that I had a Cleft of the Soft Palate. After 8 days in the NICU and with the help from Mum and Dad I was sent home with naso-gastric feeding tubes, specially designed Chu Chu teats and a whole bag of medical supplies.
My absence from hospital was short; feeding issues meant I couldn’t gain weight, in turn meaning I easily got sick, and sometimes very sick. I was diagnosed with severe chronic reflux, I was in ALOT of pain ALL of the time. Finally on the 10th of February 2010 my Plastic Surgery team decided to operate to repair my palate. My cleft palate surgery went incredibly well. Due to my cleft palate I also required a set of grommets, this meant for the first time in my young life I could hear properly, and within days I begun making sounds, those of which a baby should begin making not long after their birth.
On the 30th March 2010 my dad found me in the middle of a severe tonic clonic seizure. I was rushed to hospital and after a 25minute seizure spent two days there. It would soon become clear that it was much more, the seizures didn’t stop, ranging from 30 minutes to one hour and forty five minutes, over the next 2 years I would suffer in excess of 30 severe pro-longed seizures, and countless mild seizures. After a long wait I was finally diagnosed with Cerebral Palsy and of course Epilepsy. My life has never been the same; my time is shared between, Speech Therapy, Physio Therapy, Occupational Therapy, Music Therapy, Hydro Therapy and a multitude of other specialist and therapy appointments all over the Gold Coast and South Brisbane areas. I have been assessed and it has been determined that I have a Global Development Delay.
In January 2014 I was also diagnosed with Perthes Disease. Perthes Disease has caused my legs and my ability to walk to deteriorate. I am in pain all of the time and now I’m not able to walk more than 40 metres without it causing excessive pain and discomfort. Due to this I am now in a Wheel Chair 50% of the time and restricted to very minimal, low impact exercise and very few activities. As a young boy I find this hard and very disheartening as I just want to be able to play with my big brother and my friends.
In September 2016 after 8 months of consistent and unexplained regression in all aspects of my health I had a Naso-Gastric feeding inserted and now require a permanent feeding pump. In October 2016 I had a Gastrostomy PEG inserted to ensure my long term nutritional needs are looked after. January 2017 this was changed to a permanent Mic-Key button.
Sadly the news just keeps getting worse. In December of 2016 I was diagnosed with an unrepairable DNA Repair Defect. It will takes months of DNA testing in the United States to determine what, if anything can be done from now on.
On a high note I achieved something my family thought would never be possible. I started Prep in 2014; I am now in Year 3 and learning at my own pace. I love school, and socialising with my friends. I am starting to learn basic words, I wear R-Wraps on my legs and have special frames to help me be a little more independent using the toilet and washing my hands at home.
My parents have been so good in helping me with as much as they can however sometimes they just don’t have enough for everything. The constant driving to appointments costs a lot of money, and so does all the extra therapies and equipment that I will continue to need. This page has been created to raise funds, for Speech, Physio, Occupational, Ophthalmology, Travel, Parking, Hospital and Feeding Requirements as well as Hydro Therapy Blocks, or any other additional therapies, resources or specialised equipment needs that I have ahead of me in my long journey to show the world just how strong I can be.
With funds generously donated via Sunshine Butterflies you can help me thrive, and continue to show the world just how brave and determined I am. Thank you kindly in advance.
Regards, Samuel Amiet, My Mummy, My Daddy and Big Brother Cooper
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Our son Jett was born in September 2009. He was a very quiet baby and slept a lot. We thought we were blessed with the ‘perfect’ child but from around 4 months we were concerned as he didn’t smile, babble or give us any eye contact. We continued on, but grew further concerned as Jet...