Mobility For Ava

This story began on March 10, 2014 at 12:25 pm when our daughter entered this world at 24 weeks gestation. Ava was born 16 weeks early weighing one pound eight ounces and eleven inches long. She suffered a grade 3 & 4 brain hemorrhage (brain bleed) at birth from such an extreme birth. The tiniest little baby girl but as we have come to find out, also the strongest! 


Ava spent the first 176 days of life at the Lutheran General  NICU (Neo Natal Intensive Care Unit) after being transferred from the hospital where she was born. There at LGNICU, she fought for her life on several occasions. She overcame many major surgeries such as a PDA Ligation (heart surgery), she had 4 inches of her small intestine removed due to Necrotizing Enterocolitis (NEC) and multiple eye surgeries. 



Once Ava was discharged from the NICU, our daily life consisted of  a strict routine of doctors appointments, medical equipment and life support, medications and countless therapies. A few days before her first birthday, I left my carrier as her needs where too much for me to juggle while working. As she has grown, she has been discharged from the life support equipment, medication and some specialists but we have gained new types of equipment and specialists. Around her second birthday we received the life-long diagnosis of Quadriplegic Cerebral Palsy caused by an extreme birth and the brain bleeding. 

Quadriplegic C.P. is a severe diagnosis. The brain has severe damage and the person has very limited to no control of their limbs (my non-medical explanation). Ava can not walk, talk, feed, clothe or even play independently. Her father, Bret and I are Ava's life line including mobility, all day every day.

Ava is now four years old and the love of our lives! She is happy, sassy and social. She just finished her first year of preschool. She still has three therapies weekly. Physical, Occupational and Aquatic Occupational therapy that we do privately.  Bret and I try to give her the life that every four year little girl should but the physical demands are starting to take a toll on our bodies. Bret recently had back surgery in November of 2017. My concern is another injury. He still pushes himself as we don't have or can afford help.

Our mobility outside the home is becoming a struggle. We are in the process of building an ADA approved ramp at our front door which is forcing us to take a second loan out against our home. We are also in need of an accessible vehicle sooner than we anticipated. Ava has four pieces of equipment that we travel with, at least one of them, daily. Adaptive tricycle, wheelchair, walker and stander. Each of these pieces of equipment are just a few of 11 we have at home. We lift and place her in each daily for positioning so that she may not only experience her surroundings but prevent muscle tightness and future damage. We currently lift each piece of equipment into and out of the back of our Ford Escape when traveling.  We take her to forest preserves, parks, play dates, the library, school and the store. 





Ava's needs are beyond exceeding our one income. Bret and I have given up so much to get her this far and to keep her in private therapies.  Honestly, we have never been able to catch up since she was born. We are doing our best but we still have past medical expenses to be concerned about. Not only are her needs growing but so is she which means her equipment gets larger. 

I'm reaching out for help because I feel that she deserves every life experience, the memories and most of all the freedom of mobility. 

I thank you for reading our story. Any act is an act towards our goal!

With great appreciation and love -
Bret, Chantille and Ava