In a surprise twist from yesterday’s post, the Toronto Star reports today that 2-month-old Kaylee may be sent home.
Yesterday, they took the child off life support to allow her to pass away. There was hope that her heart would be viable for transplant for another child at Sick Kids.
When they took her off life support she began to breathe on her own.
Kaylee has rare brain disease called Joubert Syndrome. The disease affects the cerebellar vermis causing hyperpnea, hypotonia, oculomotor apraxia, mental retardation, and ataxia. The disease prognosis ranges from mild to severe depending on how developed the cerebellar vermis is. However, the bottom line is that children can survive with the disease.
In Kaylee’s case, she normally stopped breathing when she fell asleep, but when the health team took her off her ventilator she began to breathe on her own.
“How long would she live? It’s a hard question,” her mother said in a Toronto Star interviw outside the hospital tonight. “It could be months to a couple of years. Doctors said she has such a severe case (of Joubert Syndrome) that she won’t be able to see, walk or talk.”
To me, the strength of life in this little child is truly amazing.
