Aug 10
25
Trisomy 9 Mosaic Syndrome has affected so few children. With very little exception, they all have one thing in common – short life expectancy. Most children live until pre-school age, and the common cause of death is an infection they couldn’t fight, or more severe problems such as heart or kidney failure. Maggi has been hospitalized and almost lost her life a handful of timesdue to infections she caught while being around other people. Her spine is so severely curved that she has a difficult time with regurgitation and basic productive coughing to remove congestion. This can cause Maggi to aspirate, sending some of the fluids into Maggi’s lungs.
Maggi’s heart and kidneys are checked annually and continue to check out fine.
Her future treatments and surgeries include (but are not limited to):
- Eye muscle surgery, date pending due to spine surgeries and health issues.
- VEPTR II Rod lengthening surgeries occur every 3-6 months and will continue until she is ready
for spinal fusion (tentatively around age 8).
- Dental surgeries will be required as needed due to damage done by medicines to her teeth and
potential craniofacial issues.
- Maggi wears AFOs (Ankle-Foot Orthoses) to help her stand during physical therapy.
- Maggi undergoes daily therapies for her restricted lung disease with an inhaler 2x/day, and breathing
treatments as needed. She may also be getting a pulse-ox monitor and oxygen soon.
