The illness forced Maddison to reside at Musgrove Hospital in Taunton, Somerset, to be fed and treated through a tube and monitored 24 hours a day. However, doctors are preparing to release her from the hospital after the family pledged to adhere to strict care given to Maddison in her room.
When Maddison was born in October 2011, doctors noticed it was strange that he only gurgled instead of bursting into tears. But it was only when the baby was given a bottle of milk that people realized the severity of the illness when Maddison started turning pale and suffocating. Doctors had to move Maddison to the intensive care unit for 8 weeks to learn about this strange disease.
In December 1011, Ms. Whately’s family and her husband Gene Gill were given permission to bring their daughter home, but they had to return to the hospital two days later because Maddison started turning bluish-gray. Since then, I have to stay in the hospital.
Maddison has undergone many surgeries, including tracheostomy and gastric bypass to help him breathe and eat, but doctors are still powerless to diagnose the disease.
Her mother Whately said: “Basically, she has no reflexes. It can control the facial muscles to smile, but cannot cry or swallow. After her tracheostomy in July, she learned a lot more. It can roll, balance, and stand on two feet.”
Once home, Maddison will receive 24-hour care, with nurses watching as he sleeps to make sure nothing goes wrong. Care professionals will also visit 5 days a week to monitor your child’s health.