Our little warrior Raphael Jeremiah Nadong was born on the 16th of May 2016 at St John of God, Berwick. He was born prematurely at 35 weeks via emergency C-section where a ‘CODE BLUE’ was raised as he stopped breathing and needed to be resuscitated back to life shortly after birth. Due to this emergency situation, he was sent to Monash Hospital NICU (Neonatal Intensive Care Unit) where he spent the first 5 months of his life being thoroughly investigated and assessed by a team of consultants. However, the medical team were unable to provide a conclusive diagnosis due to the rarity of his disorder. From that moment on, he had to endure a number of unimaginable challenges.
Raph has had many complex medical issues due to his undiagnosed genetic disorder, some of which include: difficulties in swallowing, cleft palate, choking, muscle rigidity, global developmental delay, breathing issues, abnormal brain function, seizures, severe hearing loss, Atrial Septal Defect or ASD (hole in the heart), contracted fingers and most recently – respiratory distress and pulmonary hypertension.
Since birth he’s been on oxygen, has been tube fed through his abdomen and needs constant suctioning to clear his airway. He requires 24/7 care as he can stop breathing multiple times a day.
Luckily for Raph, he has such wonderful, loving and supportive parents, Jen and Eugene, who have been beside him every step of the way. They have been vigilant and extremely dedicated to ensuring that their son is provided with the best care possible. Families and carers of children and young adults with rare diseases, experience significant psychological stress due to social isolation, unemployment, diagnostic delays, lack of information and difficulty accessing the appropriate health care.
To care for Raph, they have sacrificed so much and have endured unthinkable and gruelling moments that no parent should ever have to go through. They’ve made multiple trips in and out of hospitals (Monash Hospital and Royal Children’s Hospital) including long stays from weeks to months at a time leading them to have to leave their jobs and halt their careers to care for their little warrior. Their lives have been drastically changed, but they are true warriors themselves. This journey has been physical, emotionally, mentally and financially draining for their family.
What lies ahead for Raph is very unclear but what we do know is that he requires a few surgeries in the near future and will always need a heightened level of care from both medical professionals and his parents.
As their friends and family we try to provide emotional and financial assistance where we can, however, we can only provide them with so much. We humbly seek for your ongoing assistance and kindly ask that you extend a helping hand for not only Raph but also for his parents. The money raised will allow them to:
- Purchase all necessary special needs equipment (ie. special needs stroller, bath, mobility hoist etc.) immediately without having to rely on and wait weeks to months at a time to get funding approved.
- Make all necessary modifications to their home to ensure Raph has safe access around the house in his seating system.
- Have money readily available for future surgeries, emergencies, specialist consultations and for day to day necessities.
- Help alleviate financial strain.
- Purchase a wheelchair accessible vehicle.
How can YOU continue to help?
Any donation that you can afford to help them would be greatly appreciated. Every donations counts, every donation makes a difference.
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We all know the power of social media, so please help us use this space to not only spread the word and build support for Raph and his family but also raise awareness of his rare medical condition.
FOLLOW RAPH’S JOURNEY
Head over to his Facebook Group by clicking on the following link: Warrior Raph
Please help our little Warrior Raph in his journey of survival.
Sherryn Distajo (Sister-in-law)
Anne Tejido (Family Friend)