Lyla's Lifesavers- CRPS Fundraiser

11/18/2021 Story Update
We have far exceeded our original goal, thanks to the amazing generosity of friends and strangers alike. You can read the latest news in the update section below. We have disabled donations at this time, but thank you for all of the support. There is light at the end of the tunnel for Lyla. She will be starting her treatment soon.

Original Story:
Have you met Jerry? He can be a real jerk.

 

Jerry is Lyla’s left leg. Until February of this year, Jerry didn’t need a name. But after a typical afternoon of baking with her mom, Lyla suddenly fell to the floor screaming in pain. Life since then has been anything but normal for this sweet 10-year-old.

 

After many sleepless nights, doctor’s appointments, x-rays, painful tests, and blood work, Lyla was diagnosed with a rare disease called CRPS (Complex regional pain syndrome). Complex regional pain syndrome is a condition that causes pain and other symptoms. Scientists believe abnormal nerve functioning causes an overreaction to pain signals that the nervous system can’t shut off. This condition causes acute pain for Lyla, so much so that she loses sleep, misses school, and has even expressed the desire to not be alive anymore (this chronic disease has been dubbed the “suicide disease” by those who are afflicted).

 

 

 

 

Lyla has been a trooper through the entire confusing and crazy roller coaster of her illness. Naming her leg Jerry is just one way Lyla’s been able to cope with this illness, but she needs our help.

 

Lyla has been waiting months in agony to be approved for treatment at Cincinnati Children’s Hospital, which has a program specializing in CRPS, and which her doctors agree will give her the best chance at a normal life. She finally received word that she was next on the wait list, but then her family received the crushing blow that their insurance will not cover the treatment.

 

 

 

 

Heather and Derek, Lyla’s parents, have been fighting for over six weeks with the insurance company to no avail. Lyla can’t wait and needs this treatment now.

 

 

 

 

CRPS is one of the most painful conditions that exist. It can reach 42 on a pain index that maxes out at 50 (to put that in perspective, Heather’s recent broken ankle "only" reached a max of 20 on that scale).

 

Lyla describes her pain as burning shocks that, while focused on her left foot from the ankle down, can radiate all the way up her leg at times. It can feel like something scalding is touching her or that it is freezing to the point of stabbing. A blanket on her can cause significant discomfort. Shoes can be challenging to wear and keep on. Sometimes pants feel so uncomfortable she can't wear them. Lyla on most days will say that her typical pain level is about a 6 or 7 out of 10, and many days she stays on 8.

 

 

 

 

Lyla’s grades have suffered, and more importantly, her mental health is deteriorating and she is losing hope. She is begging daily for help with the pain and to start treatment.

 

 

 

 

Lyla’s parents are public servants. Her father, Derek, is a special education teacher. Her mother, Heather, works for a nonprofit that serves veterans who want to serve in their communities. They are both the most loving, caring, and giving people in our community, and they need our help.

 

Let's do what we can to lift the pain for Lyla and get her the treatment she desperately needs.

 

Let's kick Jerry to the curb.

 

 

 

 

Describe the recommended treatment:

Given her stagnation and the decrease in her mental health, the recommendation is that she needs to have intense treatment of desensitization in a setting that can provide training for her on how to manage the pain while doing this, that can provide coping strategies to apply to different situations, and can help build her ability to be in control of getting functional independence back. It would take a full approach to that-the physical, mental, emotional, and muscular. It also provides support and training for her family so that they are able to be prepared to continue with the structure and appropriate support when they are back home. This treatment is at Cincinnati Children's Hospital (https://www.cincinnatichildrens.org/service/p/pain/pain-management-center/pain-management-clinic) and will last a minimum of two weeks. At least one caregiver needs to be present at the treatments, which will mean temporarily being out of work and relocating to Cincinnati. The out-of-pocket cost for the treatment alone is $67,000. We are asking for slightly more to cover travel and accommodation costs, as well as the GoFundMe processing fees.

 

Explain how quickly you need the funds:

Lyla asks (and almost begs) at least twice a day every single day when can she start the program. Her grades are suffering. Her happiness is dwindling. Her light is fading. With the decrease in her mental health, her family and doctors feel strongly that the sooner Lyla can get the treatment, the better. Every day that she isn't getting the treatment in the program, she is losing hope that she will ever have the chance to get back to the things that she loves. This is extremely urgent.

 

Tell how these funds will help your loved one:

Not only will this get Heather and Derek closer to getting Lyla treatment in the program, but it will give her hope again. 

 

About Lyla:

• Her nickname is Toots.

• She loves pigs so much that she wrote a persuasive letter to her subdivision trustees to ask them to change the regulations so that she could have a pet pig.

• She loves soccer.

• She wants to be a veterinarian.

• She loves to bake and cook and has dreams of one day being on Kids Baking Championship.

• She has a huge heart and is one of the most empathetic people- even when she is in so much pain, she is constantly checking on her family, her friends, and others.

• She has named her affected leg Jerry. She says things like, "Jerry is really terrible right now" or, "Jerry is really swollen".