Healing Bohdi

Bohdi was born into the world on the 6th March 2017, a beautiful chubby 10pound ball of pure love. Bohdi was born via emergancy C-Section at 1055pm in Adelaide, SA to Shaun and Maddison. Bohdi was born blue, limp and barley breathing, suffering from perinatal asphyxiation - which means that Bohdi wasn't receiving oxygen for an unknown amount of time. He was immediately taken by Medstar Retrieval team and sent unaccompanied by either of his parents to another hospital to receive intensive & specialised care. This hospital is where Bohdi spent his first month of life in the NICU, fighting for his life against an array of illness'. Only hours old, this beautiful baby started having grand mal seizures. With a blood glucose level of 0.9mmol, he was slipping in and out of consciousness as intensive care staff were fighting to get his blood sugar up enough to prevent further hypoglyciemia, seizures and permanent brain damage. It took 72hours for Shaun & Maddy to gain access to finally meet their baby boy and hold him for the first time. After a traumatic birthing experience for all 3, things didn't stop there.  Bohdi sustained HIE - a brain dysfunction caused by a reduction in the supply of oxygen to the brain and other organs. He was diagnosed with profound hearing loss which requires Bilateral hearing aids at age 12 weeks!

Alongside the major complications at birth , an array of intrusive tests were conducted and a diagnosis was made on day 5 of Bohdi's life. A SUPER RARE condition called ‘Congenital Hyperinsulinism’ - affecting only 1 in 50,000 infants worldwide. Congenital Hyperinsulinism is a condition that causes individuals to have abnormally high levels of insulin, which is a hormone that helps control blood sugar levels. People with this condition have frequent episodes of low blood sugar (hypoglycemia). In infants and young children, these episodes result in permanent damage and critical conditions, characterised by a lack of energy (lethargy), irritability, difficulty in feeding and therefore developing repeated episodes of low blood sugar - again increasing the risk of serious complications with breathing difficulties, ongoing inconsistant seizures, intellectual & physical disability, vision loss, brain damage, and coma.

The challenges Bohdi & his parents have met during his short 17 months of life are endless, but have never ceased to dull the infectious kind soul and cheeky personality this boy radiates to everyone he meets ✨ 
This lively little soul endures countless glucose infusions, MRI'S, Nasogastric feeds and is given  Diazoxide - an insulin inhibitor which Maddy and Shaun administer 3 times a day to prevent hypoglycaemia, as well as a heel prick upward of 3-4 times throughout the day & night to monitor blood sugar levels, with 1-2hourly feeds to maintain his sugar and constant behavioural monitoring for signs of dropping blood glucose levels. Bohdi has been faced with more hospital admissions than most adults would have in a lifetime, has endured a handful of surgical admissions & procedures for birth defects - At the latest endocrine appointment it was discussed that Bohdi is a prime candidate for a pancreatectomy, where surgeons remove half or all of the pancreas in aims to level the production of insulin - and with the constant care from his parents, Bohdi attends multiple weekly early intervention and specialist appointments to provide him & his family with knowledge & guidance on his rare conditions to provide him with a better quality of life.

Maddison's aim and passion is to create change and bring awareness to the challenges and the incidence of Congenital Hyperinsulinemia in babies and children. Her fight with the current eligibility criteria within Australia for babies with CHI to access a CGM (congenital glucose monitor) is ongoing and tedious. Maddison and Shaun are  whole-heartily driven to supporting their strong, spirited, energetic little man with any challenge that he has to face. Both parents are extremely dedicated to being THE voice that needs to be heard, not only for Bohdi, but for other families like theirs, ensuring the daily struggles and life long battles for these children will one day be widely recognised and accepted as the critical condition that it is and for awareness to be brought to the importance of having access to medical equipment and required resources and services. 

The CGM device would provide Maddison and Shaun constant and accurate access to Bohdi’s levels - regardless of Bohdi is awake or sleeping and they can access the information directly whether Bohdi is in either their care or elsewhere - such as attending daycare. Unlike a blood glucose meter (BGM), which provides just a single glucose reading, CGM device systems can provide real-time, dynamic glucose information every five minutes — up to 288 readings in a 24-hour period. Giving users valuable & detailed information about the individuals glucose levels and providing access to additional insight to assist in proactive management of blood glucose levels. With this device, it eliminates the need for Maddy and Shaun to wake Bohdi throughout the night and endure long sleepless nights battling a toddler back to sleep due to having to prick his heel and the device could simply ease Maddy and Shaun’s minds and constant worries about an impending hypo, which has taken an enormous affect on their everyday lives and overall health and well-being. 

Not only has this young family been forced to deal with these unexpected circumstances and the unexpected cost of endless medical bills and expenses, but due to the constant care of Bohdi's complex medical needs, the lack of knowledge & resources for others to use the current monitoring equipment and being hours away from family - it has made it impossible and unrealistic for Maddison to return to her full time position as a nurse. And on top of these expenses, after countless applications and rejections due to "No funding" or “ineligibility” the family is now left no choice but to pay for this vital medical device without healthcare funding or assistance, which alone adds up too $5000 per device, each year. 

For a child whom is non-verbal, has no ability to communicate that he is feeling "off" or feeling a hypo come on, these life saving devices are crucial. 

If you can, please join us in showing our support and raising money for this selfless, strong little family, to ease the pressure of purchasing these CGM devices and help them to raise awareness of this condition.