Hello, my name is Kim, and I am Jezlyn’s mom. Jez is 26 years old, and she has been fighting an unimaginable battle with multiple chronic illnesses for much of her life.

Jez has a genetic connective tissue disorder called Ehlers-Danlos syndrome (EDS), Dysautonomia, Gastroparesis and intestinal dysmotility (GI tract paralysis), Lyme Disease, and a long list of other co morbid conditions, leaving her relying completely on IV nutrition (TPN) and IV hydration for the last 3 years after failing various feeding tubes for the last 6 years. Due to her conditions, throughout the years she has experienced many complications such as Sepsis, Pulmonary Embolisms, GI bleeds and more. Most recently, this July she underwent her 10th major abdominal surgery involving the removal of her colon, rectum, and part of her small intestine, and converting to a permanent end ileostomy. Her body continues to try to heal and regain a semblance of her baseline functioning despite complications including infection, requiring blood transfusion again and unmanageable pain.

Her illnesses have taken so much from her.

Due to Ehlers Danlos and her other conditions, Jez’s body doesn't heal the way a healthy person's body does, and medical procedures often mean prolonged recovery, significantly more difficult pain management, and various complications.

She lives with pain and medical challenges every single day.

Over time, Jezlyn has become extremely weak and unstable. She can no longer safely walk without support of mobility aids, and stairs have become increasingly dangerous.

This past April, Jez fell down our stairs. During the fall, her central line that she relies on to survive was pulled out and had to be replaced leading to yet another traumatic hospital admission for her. That experience was terrifying and eye opening for all of us and made it very clear that our home is no longer safe or accessible for her as it is.

We have moved Jez’s bedroom from the second floor to the first floor because she can no longer safely use the stairs. But simply moving her bedroom downstairs isn't enough. She needs a home that allows her to move around safely and maintain as much independence as possible.

Jezlyn has already lost so many of her dreams. Before illness fully took over so much of her life, she dreamed of becoming a nurse. She was accepted into a nursing program and was so excited to begin that chapter of her life. After the first semester, she was told that she would have to withdraw from the program because a necessary medical operation would prevent her from attending clinicals. The school told her that taking time away from clinicals was not acceptable, and she had to make the heartbreaking choice to withdraw or risk receiving failing grades for the entire semester. She was crushed, but she didn't give up.

Eventually she changed direction and began pursuing a different degree, taking only two or three classes at a time, often online, and often taking semesters off because that was what her health would allow. She hopes that someday she might still be able to pursue a master's degree in nursing, or become a child life specialist.

Even that dream has been incredibly difficult to pursue because her health continues to deteriorate. At times, she has had to withdraw from classes because her body simply wouldn't allow her to continue.

As her mom, watching this has broken my heart. I have watched my daughter lose opportunities, independence, physical strength, relationships and dreams that she worked so hard for. I have watched her live with pain and require constant medical care when she should be out experiencing the world and building her future.

Jez doesn't deserve this. Yet, despite everything, she remains one of the strongest and most loving people I know. We want to give Jezlyn some independence back.

Our biggest dream would be to build an accessible addition to our home where she could have her own space while still being close enough for us to help her whenever she needs us. She has been on housing lists for approximately eight years because of her disability, and due to extremely long wait times and budget cuts, nothing has become available.

We know that building an addition would be an enormous undertaking, and we understand that raising enough money for that may feel like a miracle. So we are starting with what we can realistically accomplish.

Our immediate goals are to make our home safer and more accessible for Jez by:

• Creating an accessible bathroom

• Installing a wheelchair ramp

• Making necessary accessibility modifications throughout the home

• Helping Jezlyn obtain a properly fitted custom wheelchair - Insurance provided Jez with a wheelchair, and we are incredibly grateful for that help. Unfortunately, it has not suited her needs for a while and that wheelchair broke and has been unreliable for months. A wonderful company recently provided her with another wheelchair, however, it is not a custom wheelchair, having a chair properly fitted to her body is incredibly important for comfort, positioning, mobility, and preventing additional physical problems.

• Working toward a wheelchair-accessible vehicle as transportation has been another barrier. Jezlyn is often unable to lift her wheelchair into and out of our current vehicle. There have been times when this has prevented her from leaving the house and has even caused her to miss college classes and appointments because she simply could not get her wheelchair in or out of the car safely and independently.

A wheelchair-accessible vehicle could completely change her ability to participate in life.

• Eventually, if we are blessed enough to raise the funds, creating an accessible living space for Jez attached to our home.

Jezlyn deserves more than survival.

One of her greatest loves is traveling and nature. She dreams of visiting the all the National Parks, as well as experiencing the beauty of the world has to offer.

Those things may sound simple to many people, but for Jez, they represent freedom.

The freedom to leave the house.

The freedom to go to school.

The freedom to travel.

The freedom to make plans without wondering whether her body or her wheelchair will make them impossible.

The freedom to live with dignity and independence.

The freedom to experience the world around her that’s not solely based on keeping herself alive.

Jezlyn has spent so much of her young life fighting simply to get through the next medical procedure, the next hospitalization, the next complication, the next painful day.

We want to help give her a chance to live, not just survive.

If you are able to donate, every dollar will go toward making Jezlyn’s environment safer and more accessible and helping her regain some of the independence and freedom that chronic illness has taken from her.

If you aren't able to donate, sharing her story would mean just as much to our family. You never know who might see it, who might be able to help, or how far one share could reach.

From the bottom of our hearts, thank you for taking the time to learn about Jezlyn.

Thank you for believing that her life and her love for life matters. Thank you for helping us give our daughter some of the freedom she deserves. And thank you for helping Jez continue to hope for a future where she can experience the world beyond doctors, hospitals, procedures, and suffering.

She is only 26. She has already lost so much. We want to help her get some of her life back.

With love and gratitude,

Kim

Jezlyn’s Mom