Phoenix Rising Bone Marrow Transplant



Phoenix Baines (in her father's) arms was born January 31st, 2014. At 8 weeks old she fell ill with fever. The persisting fever led to several ER visits but no diagnosis. We were sent to CHOP at the direction of her pediatrician where she was diagnosed with HLH. Hemophagocytic Lympho Histiocytosis (HLH) is a rare immune disorder that is highly fatal if untreated. For most, a bone marrow transplant is the only hope of survival. Phoenix endured 12 weeks of chemotherapy before receiving her life saving bone marrow transplant from Melissa Diaz (pictured next to Phoenix). She was 5 months old at the time of transplant and her donor remained anonymous until 1 year later. Unfortunately, Phoenix developed a secondary disease as a result of transplant called Graft Versus Host Disease which is also life threatening. She continued treatment for 3 more years taking up to 13 medications several times a day and much therapy to help restore her mobility. Phoenix was granted a Make a Wish Trip in May of 2017 which was planned by Officer Jim Jones of the Glassboro Police Department. In May 2017, upon returning from meeting Minnie Mouse Phoenix was seen by her Oncology Team at CHOP who declared her free of HLH and stopped all medications. She continues to endure surgeries as a result of damage causes by HLH & GVHD. The journey has been long and hard. We were blessed to meet Melissa at last year's 5k to Fight Histio in NYC. Each summer we begin raising funds so that our family can participate in the 5k and raise funds for Liams Lighthouse Foundation. Thank you for letting us share our story. #PhoenixRisingHLH

A diagnosis of HLH can be terrifying for a family. To be told that your infant must immediately start chemotherapy or will die is a hard concept to wrap your mind around...only to be later informed that she will also require a bone marrow transplant. Phoenix has been blessed in many ways through this journey.  Blessed to be diagnosed quickly.  Blessed to be at The Children's Hospital of Philadelphia.  Blessed that mommy is able to be with her around the clock and that Daddy and Mariah are able to visit daily.  Blessed that she has a 10/10 donor match and BLESSED to be loved by so many people.  It's one of those moments that forever change the course of life.  This journey is about more than just Phoenix.  It's also about the friends and family that are close to her and the family.  God is touching and transforming the lives of many through this and we admire Phoenix for being a vessel to be used by the Lord.  In these moments you cling to your faith with confidence that God will supply all your needs and will not put more on you than you can bare.  Your donations will alleviate some of the financial burdens that are experienced when a parent loses their job to care for an ill child while also absorbing huge medical expenses on a single income.

Donations

  • Rosalinda Walcher  
    • $50 
    • 23 mos
  • Monica Prieto 
    • $50 
    • 23 mos
  • Brandon Morgan 
    • $25 
    • 23 mos
  • Matthew McDowell  
    • $50 
    • 23 mos
  • Vanessa Diaz 
    • $25 
    • 23 mos
See all

Organizer

Donna Baines 
Organizer
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