Layla's Bone Marrow Transplant

Loveable Layla Battles Sickle Cell

Layla is an ordinary girl. She loves to ride her bike, watching TV and enjoys a good laugh. She is the girl next door, the little darling at church and the bundle of energy to make any heart melt with one smile. However, Layla has a secret. Her secret is she is extraordinary. Here’s why, Layla battles sickle cell, a severe hereditary form of anemia.

Do you know what happens when you have sickle cell anemia?  Simply put, it is a red blood cell disorder. Cells carrying oxygen are not formed correctly. These abnormal blood cells which lack oxygen causes attacks of sudden, excruciating pain, in a person’s body. Pain attacks occur without warning, and a person often needs to go to the hospital for effective treatment.

As ordinary as Layla may appear in a classroom with her peers, by the time Layla was eight years old, she suffered four strokes, had corrective brain surgery for Moya and most recently had a bone marrow transplant. She was discharged on August 11th 2016 after a successful transplant but with strict instructions. 

Your daily morning routine may consist of a swig of Starbucks but for Layla she digests a mouthful of oral medications, as many as three times a day. You may forget your dose of Vitamin C but Layla has two sets of IV medication her mother administers through her PICC line twice daily as well as insulin shots based on a sliding scale three times a day. What do you have for lunch? Anything you want really but Layla does not have a choice between Wendy’s, Bamboo Shack or Popeyes! She is a third grader restricted to a low bacteria diet and counting her carbohydrates. It’s not surprising to understand why Layla’s meals are cooked fresh daily for breakfast lunch and dinner.

After being discharged, Layla visited the hospital for her follow-up appointments twice a week. Up until Layla’s 100th day post transplant, she was confined to mostly indoor activities as her immune system was highly compromised. During this time, she received tutoring in mathematics, language, speech, occupational and physical therapy at the former Miami Children's Hospital now Nicklaus Children's Hospital.

Around Layla’s 140th day post transplant on December 12th 2016 she received great news; she was clear to travel home to The Bahamas. After hearing this exhilarating news, her bags were packed without any hesitation and on December 15th 2016 Layla and her mother returned home. It was a perfect Christmas reunion with family and friends.

On January 3rd 2017, with her doctor’s permission, Layla was allowed to return to school for half days. However, she was not allowed to participate in physical education, swimming, recess or any other outdoor activities, all of the fun subjects for a little girl excited to be alive. For the first month, she adjusted well. The joy of friends, spelling tests and loving teachers kept her on par with her classmates. Around February 5th 2017, Layla began to complain about tummy aches and her appetite started to diminish.  Over the next several days, Layla’s mom carefully observed her symptoms. Layla was getting worse. Soon she started having diarrhea. On February 7th Layla stayed home from school but not without her mother alerting her doctors in Miami. They quickly advised her to bring Layla for a visit immediately. With their luggage packed once again, unsure of their return, Layla and her mother were on the flight the following day.

Layla was admitted for a twenty-four hour surveillance as doctors suspected Layla may be experiencing Graft Versus Host Disease (GVHD). Those apprehensive twenty-four hours eventually became one week as tests were performed. It was confirmed. Layla was diagnosed with chronic GVHD. She suffered blistering mouth sores, skin rashes, inflamed intestine and extensive stomach, pain and diarrhea. Doctors administered emergency treatment for the disease. Layla’s two day hospital visit turned into five weeks.

Finally, there was a light at the end of the tunnel. Layla’s doctors announced her discharge would be on March 14th, 2017. Unfortunately, before this could happen she experienced yet another set back; Layla suffered her 5th stroke along with symptoms associated with Posterior Reversible Encephalopathy Syndrome and seizures. On the eve of Layla’s discharge, she was admitted to the ICU. Layla is currently still in the ICU recovering from PRESS and multiple seizures. After 8 days in ICU her seizures are now under control and she is almost back to her baseline, she has been moved back to the BMT unit to continue her recovery before being discharged.

Layla is eight months post transplant.  She is not as jubilant as the girl next door, the little darling at church or the bundle of energy which can make any heart melt with one smile but Layla is a fighter. She refuses to give up. She has been on a restricted GVHD diet over the last six weeks and at least twice a week she is NPO (nothing oral). For those who know her, they know Layla loves food, it is her motivation. With that said on a daily basis she asks for the most exorbitant foods her fragile system cannot handle. Think of Layla the next time you crave chocolate with almonds. She constantly talks about the various restaurants she will patronize when she is all better including Chipotle; one of her most favorites. You think you have short and long term goals to pay off your mortgage, lose weight and be an overall better human being but I bet Layla’s dream to achieve her goal of a delicious meal brings a bigger smile to her face than yours could ever muster.

Many of you are parents of children Layla’s age. Today you may have taken for granted the opportunity to take your child on a field trip to Montague Beach, you overlooked the blessing of your daughter talking your head off as she lays in your bed way past bedtime. You may think life is hard, it’s not fair and what you would do to change it but take a moment and pause for Layla, for so many other children fighting the similar journey. Take a moment for Layla’s mother, Tamara and all the other parents who in addition to parental responsibilities, are nurses, chefs, teachers and playmates while secretly wishing the disease would ravish their bodies instead of their child. Stop. Take. A. Moment.

Based on all that Layla has endured over the past two months her lead specialist has suggested Layla remain in Florida close to her doctors for another six months to one year to ensure complete recovery before returning home to the life she once knew.

This transition and life changing decision will not be easy but I was always told life isn’t easy but it’s worth living. To save my child life this sacrifice is worth it. We are requesting your financial assistance to help make this happen. No amount is to small as every dollar counts. Funds will be used to assist with co payments, food, housing and transportation.

Thank you in advance for your donation and God Bless all of you.

Donations

  • Kristina Wallace Whitfield 
    • $25 
    • 36 mos
  • Anonymous 
    • $30 
    • 36 mos
  • Cammy Dun 
    • $100 
    • 36 mos
  • Shelley Cleare 
    • $150 
    • 37 mos
  • Anonymous 
    • $200 
    • 37 mos
See all

Organizer and beneficiary

Tamara Riley 
Organizer
Miami, FL
Yolanda Wallace 
Beneficiary
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