(Chelsea Update would like to thank Sheri Daugherty for the information in this story.)
On June 19, Lyla Christie was diagnosed with an Aneurysmal Bone Cyst tumor between her C2 and C3 cervical vertebrae.
Two days later, she had her first of many MRIs to help surgeons know how to best remove the tumor. These types of tumors tend to be aggressive and more likely to grow back after surgical removal so it was decided that Lyla needed to have an angiogram to locate all blood vessels supplying the tumor, embolization to stop blood flow, followed by cryoblation to freeze the mass instead of removing it.
On June 29, Lyla went into the 4-hour surgery to perform each of these procedures. After 6 hours, doctors became concerned that Lyla was not waking and began struggling to breath. She was intubated and rushed into an MRI and it was confirmed that a thermal injury of the spinal cord had occurred during the cryoblation procedure.
Lyla woke with a breathing tube requiring the support of ventilator and paralyzed from neck down.
The family spent four weeks in PICU at University of Michigan Motts Children’s Hospital, where Lyla had a tracheostomy and GI-tube placed. After becoming more stable on her vent she was able to move to the Stable Vent Unit of Rehab at Mott’s.
Lyla is learning to live life in her body with its new condition and shows courage every day to try doing things a new way.
Lyla is a compassionate and creative 10 year old who was preparing to enter the 5th grade in the fall. She loves to draw, paint, sculpt clay, play piano, sing, and ride her bike. She has three older and 1 younger sibling.
The family has significant medical debt, which it has been making payments on for almost 2 years. Lyla’s older brother was diagnosed with autism and ADHD and it has been very difficult to get him the mental health care that he needs due to insurance.
Mom Jennifer and Lyla have both had mental health needs that are being paid for out of pocket as well. In September, one of their other children became very ill and was diagnosed with Celiac disease.
In addition to medical debt, it is likely that Lyla’s father, Ryan, may need to take unpaid medical leave to participate in medical training for Lyla’s discharge from the hospital to help her adjust to home life.
This possibility will result in a loss of much needed income to provide for the family. Jennifer Christie does not work as she provides for the care of all five children in the home.
Once home, Lyla will need to be transferred to and from her bed to her wheelchair and/or shower chair. Lyla’s medical condition requires many pieces of equipment in her room.
Some of the needed equipment has been provided by The Suite Dreams Project and the following people.
Nancy Kryesicki owner of By Design Interiors took the lead on this project and got the following people and companies to contribute.
- Brewster Fabrics
- Chelsea Plank Flooring
- Chelsea Lumber
- Ferguson/Kohler – Heidi Gillespie
- Gross Electric – Jessie Merkel
- Hunter Douglas – Bill Diesing
- Real Plank Flooring – Craig Fuller – owner
- Saline Picture Frame – Mary Bowe
- Stout Brothers
- Barbara Stockert
- Simon Posselt
- Surya – Whitney Lane
- Uttermost – Michelle Postma
- Virginia Tile – Joe Richards
- Washtenaw Glass
- Jackie Bucholz
The family still needs help and here’s the go fund me page for Lyla’s story and updates: https://gf.me/u/yh3z52.
The Suite Dreams GoFundMe Charity Campaign can be found here. And Lyla’s story in in the second video under “Updates.”