Lili Kolb

In august of 2020, Lili had a pulmonary edema leading to cardiac arrest, 23 minutes of CPR and an anoxic brain injury. This was a most difficult time for her and her family, but after 3 months in the ICU and 3 months of in-patient rehab, she fought to live and is still fighting to have the best life she can. Her movement is limited and she is wheelchair bound. A wheelchair accessible van would improve her and her family’s life immeasurably.

Lili is the daughter of Ryan and Morgan Kolb. She was placed with them in foster care at 5 months old in January of 2010 shortly after being released from the hospital for the first time. They officially adopted her in October 2011. Lili was born with a double outlet right ventricle and pulmonary artery stenosis among other congenital heart defects. Lili had to overcome so many hurdles in her short life – multiple hospitalizations, 8 open heart surgeries, 10’s of heart catheterizations, hearing loss, learning disabilities etc., and she faced them all with a smile and determination. Before her brain injury, Lili was an energetic, funny and excitable 11- year old girl growing into a beautiful young woman. She loved life and other people and her smile made everyone around her happy. She was very outgoing and everyone knew and loved her. She loved to build things, read, listen to music, discover new things and places, and most of all spend time with other people.
Things have obviously changed dramatically since her brain injury. Her movement is extremely limited with almost no fine motor control. She cannot walk, stand or sit on her own. She has a tracheostomy tube to help her breath and cannot talk – though she is learning to use an eye-tracking system to try to communicate. While we mourn for who Lili was and the beautiful woman she was becoming, we love and are happy for who she is now and look forward to who she will become. Her smile still makes everyone around her happy. She still loves to be read to, go to new places and to be around other people. She loves her dogs and is always happy when they cuddle with her.

Now almost 15 years old, Lili is bigger and more difficult to get around with. Being wheelchair bound, it is difficult to get her into the car to take her places. She has a car seat and a mini van. To take her out, she needs to be placed in her wheelchair then lifted and moved to her car seat and then the wheelchair needs to be lifted and placed in the back of the van. This process needs to be repeated in reverse to get her out. The wheelchair is too heavy and bulky for one person to lift easily making it difficult to take her some place with just one person. Being lifted in and out of her car seat is hard on Lili due to muscle spasticity. On trips longer than 2 to 3 hours she needs to be taken out of her car seat for a few minutes to stretch her legs and shift her body weight.

This fund raiser is to raise money to help get Lili a wheelchair accessible van. This would make it much easier for Lili and her family. Transporting Lili places would be much easier on her as she could just stay in her wheelchair the whole time and not need to be moved from seat to seat. On longer trips her wheelchair could be tilted-in-place to shift her body weight, making taking her on longer trips to places like the aquarium and the zoo much more feasible. The cost of getting their current van modified is about $45,000 dollars including the modification, shipment to Arizona to be modified and renting a van while their van is modified. New and used accessible vans are prohibitively expensive, with new modified vans being about $100,000.

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!