On September 24, 2016, little baby boy Philips was born at the Nanaimo Regional General Hospital.
Due to complications and an unknown breach after 12 hours of labour he was delivered by emergency C-section. The next 5 days were spent in the hospital recovering with mom and dad getting to know their sweet little boy.
During that time they were informed that little baby Philips was born with malformed hands, feet and developmental dysplasia of the hips.
On the 5th day, one of the doctors discovered that baby Philips was also suffering from seizures, and made the decision to transfer him to the NICU at BC Children’s Hospital for further testing and monitoring. He was air lifted by helicopter to Children’s Hospital. His parents had to take the ferry and drive there to meet him.
During his 3 week stay in the NICU his legs were casted, he was fitted for orthopaedic boots, he needed splints for his hands, and had two different harnesses for his hips.
Thankfully, his hands and feet have improved exponentially, but he still needs to use a cruiser harness.
He has taken five different long term anticonvulsant medications (none of which are covered by MSP) and is currently using two different inhalers to combat chronic pneumonia of some unknown cause (they are trying to diagnose this still). Currently, he has had a bad reaction to his new meds which have caused another long term hospitalization in Victoria. They have had to slowly ween him off his current anticonvulsant meds to try another type, hoping that this next medication will be the right fit.
This is the third long term hospital stay in a town away from home. It takes his mom two hours to commute from the hospital to her workplace. Dad and mom take turns staying with him because of desaturation and blood pressure concerns, as well as for his comfort and care.
He has been diagnosed with a sodium channel mutation, which BCCH neurologist believes to be the cause of his epileptic disorder. The prognosis for this genetic disorder is permanent and usually severe developmental delays and permanent disabilities. He will be in occupational and physiotherapy for the foreseeable future and will need ongoing specialized equipment (seating, transportation, et cetera).
He is such a sweet little person, and even through all of this he has had great moments laughing and playing with his mom and dad. They need some help getting through this rough time. His mom is working full time and commuting long distances between the hospital and home in order to support her family. She then spends the evenings or nights at the hospital to watch over him. Dad spends the day watching over him. His dad is also dealing with health issues and is currently on disability from work because of a condition called Pigmented Villinodular Synovitus and is going through chemotherapy and multiple surgeries to help this. They take turns at night so someone can sleep. The medical expenses and gas to travel to the hospital everyday is large enough, let alone the rent, bills, and food they have to cover. It is beginning to be so difficult to manage everything and both parents are severely sleep deprived as they are trying to get through this difficult and emotional hospital stay.
We forecast that to help cover baby Philips' expenses, they will roughly need $10,000 to help with living expenses, medication, and ongoing therapy treatments.
It is our hope that you will be able to give what you can to help this strong and amazing family. Together we can make a difference and reach our goal to help this family and allow them time to be with their son without so much stress and worry for the external demands in life - they will be able to primarily focus on baby Philips and his health.
Every little bit helps, and is greatly appreciated. Thank you for your time.
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