Honored Kid

Ally J.

Age 11
Ally J. Kid Photo

Location

Perry Hall, MD, US

Diagnosis

HLH

Date of Diagnosis

February 2009

Status

In remission

Treated At

Johns Hopkins Children's Center

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My Story

Ally is truly our little miracle girl. At the age of 6 months, after 2 months of being in and out of the hospital, Ally was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH), a rare and life-threatening blood disorder that affects 1.2 in a million children and is nearly 50% fatal. After undergoing chemotherapy and steroid treatments, 9-month-old Ally underwent a bone marrow transplant from an unrelated/unknown donor. Ally faced many complications following transplant, and spent nearly eight months, including almost thirteen weeks in the PICU, at Johns Hopkins Hospital battling side effects including severe Veno Occulsive Disease (VOD), gut Graft Versus Host Disease (GVHD), pneumatosis of the gut, and heart failure. During this time, Ally spent 3 weeks intubated and sedated, and many weeks on Bi-PAP and C-PAP while struggling to breathe. We have been told by several doctors that Ally is the sickest child who they have ever seen survive. In early February of 2010, Ally was transferred from Johns Hopkins to Kennedy Krieger Institute, a rehab-hospital, where Ally remained inpatient for 2 months and received intensive feeding therapy, as well as physical therapy, occupational therapy, and speech therapy. After 10 long months, Ally returned home with her parents.

Ally is now a sweet, funny, and good natured 11-year-old. While she still has some minor issues, overall Ally is doing very well! She is in the 5th grade, and looking forward to starting middle school next year. Ally is an amazing big sister to her two little brothers. She loves playing with friends, riding roller coasters, going boating with the family, and has a new love for acting. She played Bansai the hyena in a performance of Lion King Jr. and will be appearing as Melman the giraffe in her school’s performance of Madagascar Jr. this spring.

In June of 2010, we were lucky enough to get into contact with Ally's bone marrow donor, Kalika, who lives in California. We all had an instant connection right from the start. In the Fall of 2010, Kalika and her family traveled to Baltimore to stay with Ally and our family for a week. Since then, Ally has been to California twice to visit Kalika, and Kalika has been back to Baltimore three more times to visit. In a few months, our whole family will be traveling to California to visit Kalika and her family. We are so blessed to have such a beautiful, happy, and healthy little girl, and she continues to amaze us each and every day. In the 11 years since our journey began, we have personally known or closely followed over 60 children who have lost their battles with cancer or histiocytosis. It is our hope that with promising research and advances in medicine, children will not have to suffer so greatly and parents will not know the heartbreak of losing a child.

The Childhood Cancer Ripple Effect

Who's Honoring Me

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Children who are fighting or have fought cancer inspire others to be part of the Foundation's mission — to support the most promising research to find cures for childhood cancers and give survivors long and healthy lives.

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