Our son Brody was born at 27 weeks weighing just 2 lbs 1 oz at birth. He has spent most of his 2 1/2 years in and out of hospitals. His medical needs are increasing and we now need a generator to back up electricity if we lose power.
At age 1 Brody was diagnosed with the extremely rare form of Chiari Malformation. His is type III, which is a brain disorder with many complications such as: severe headaches, muscle weakness blurred vision, the inability to swallow and sleep apnea to name just a few.
Brody cannot eat or drink by mouth and is completely dependent on a J-tube for nutrition and fluids. He requires breathing treatments, nasal oxygen, a pulse ox monitor and a continuous feeding pump. There is also the strong possibility that our son will soon need additional motorized equipment such as a trach or ventilator.
Brody's condition has deteriorated significantly during the past year. Most children with Type III Chiari Malformation pass away because of the complications associated with this disorder. Brody’s doctors have advised us to make preparations for needed home modifications as soon as possible and we were given contact information for support groups for terminally ill children.
To keep Brody at home until the end we need a handicapped accessable bedroom and bath on the first floor to accommodate the nursing staff and all of the medical equipment he will need. Unfortunately, Brody’s equipment requires electricity and we live in an area that loses power frequently. We need a standby generator that will come on automatically in the event of a power outage.
- Jessica Mias
- Hoash Spice
Organizer and beneficiary
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