Almost 8 years ago this kooky little girl entered our lives and turned everything upside down. The day she was born we were told she had a neural tube defect called a lipomyelomeningocele, a form of Spina Bifida. Thankfully, with a little bit of physical therapy and help from the doctors at Primary Childrens Hospital in Salt Lake City Utah Layla was able to live a relatively normal life for the first 4 years.
In the summer of 2014 Layla needed a second spinal surgery that unfortunately paralyzed her right leg and caused neuropathy in the left leg leaving her wheelchair bound. Again we started physical therapy and within a year she was using a walker with the aid of braces. A year later, in the summer of 2015, she developed a pressure sore on her left great toe which we battled to keep clean and help it heal. It would come and go, but this year, we lost the battle.
On the morning March 3rd. 2018 I took Layla to the hospital worried that the infection in her toe was getting critical. After a set of x-rays it was discovered not only was the tissue and surrounding muscle infected but also the bone and joint of the great toe were in bad condition. She was transferred to the pediatrics wing of Summerlin Hospital and admitted for further testing.
On Sunday March 4th, 2018 an MRI was done to see exactly what was going on and it was decided she needed surgery. She went into surgery about 45 minutes later and Ryan and I knew we needed to change our home and make it safer for her to grow up in. Once she was out of surgery and in recovery we started figuring out what she needs.
Layla was living on the second floor of our house meaning she was doing stairs on a daily basis. Our house has carpet which makes using her wheelchair very hard and frustrates her to the point where she hates using it. Between those two factors having her completely wheelchair bound after surgery did not seem possible. Not only that, but we were told when she would come home she would need IV antibiotics for 6 weeks and wound care from an in-home nurse. So, while she recovered in the hospital and started IV antibiotics I started turning out den into her bedroom and contacting contractors to get estimates on the changes we needed.
5 days later on March 7th, 2018 Layla came home with PICC line and a ton of instructions on what she would need from now on as well as all the information for her new doctors and when they would need to see her.
Now that she is home safe and sound, and settled into her new are we need to figure out the funding part... in order to make our house functional and safe for Layla we need to make these changes.
1. Rip out the carpet and replace it with laminate flooring.
2. Turn the den into a true bedroom with closet and doors (right now her brothers are driving her nuts walking in and out lol).
3. Expand the powder room downstairs into an ADA compliant bathroom with shower.
4. Install a intercom in Layla's room to the upstairs incase she needs us in the middle of the night.
With these changes she will be able to live more comfortably on the first floor of our home and never have to worry about stairs, not being able to get a hold of us, and her wheelchair will be easier to use keeping her off her feet and letting her body heal.
Our goal is to not only help Layla now, but to hopefully prevent anything like this happening again in the future. We are by no means at the end of the road and we have a lot of obstacles ahead of us, but every step we take towards making her life safer/better/more comfortable is one step further than we were at the beginning.
***Any excess of the proceeds will be donated to the Spina Bifida Association of the Intermountain Region
- Stuart Townsley
- Donovan Familly
- Mary Ann Strand
- Kerry Strand
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