Client Spotlight
Meet Lillian
Lillian is Jen and Tony’s first child. She was born healthy and full-term on June 10, 2006. Life was going well for their new little girl until the parents noticed at eight weeks of age, Lillian could not kick or hold up her head. This was the moment that changed their lives forever.
Lillian was first diagnosed with “floppy baby syndrome.” She had poor muscle tone with little spontaneous movement. However, after numerous tests, physician appointments, and research, Lillian was finally transferred to the genetics department.
Lillian was eventually diagnosed with spinal muscular atrophy (SMA) which causes progressive muscular degeneration and weakness. This explained why Lillian experienced breathing and feeding difficulties. Lillian had also stopped growing and weighed only 13 pounds at nine months. After having her lung collapsed, suffering multiple respiratory illnesses, and Lillian actually turning gray several times, Jen and Tony thought they had lost their little girl – more than once. However, after Lillian was given a tracheostomy and placed on a ventilator, she was able to breathe more easily. Also, a gastrostomy tube helped Lillian eat and receive the nourishment she so badly needed. The physicians were pessimistic, because most SMA little ones die early, but Lillian and her parents had other ideas. They refused to give up. Lillian came home with New Care nurses just in time for her first birthday.
Since Lillian did not have to use all her strength to breathe, life really changed for the better. She is now one busy little girl. Lillian loves school, art, reading, writing, shopping, sleep-overs, watching movies, and visiting the zoo. Lillian also enjoys spending time with her brother Harrison, sister Abby, and her dog Tinkerbell. Lillian told her mother recently that all she needed for Christmas is love. Lillian is like an old soul, wise and spiritual; something you don’t expect in a five-year-old. Jen, Tony, and other family members have been wonderful advocates for Lillian and her home health nurses. We wish to thank this family for allowing us to be part of Lillian’s care. We also wish to thank our nursing staff: Katie (Team Leader), Jessica, Reiko, Lan, Rose and Brizza.
We have all been part of this miracle. Thank you, Lillian.