Makenzie H.
Indiana
Birth Date - June 29, 2012
Main Diagnosis - Radiation Sensitive DNA Ligase 4 Severe Combined Immunodeficiency Disease
THEME: Music/Dance
Makenzie's Story
Makenzie waas diagnosed in utero with Multicystic Dyplastic Kidney disorder. We always knew that kidney would have to be removed. What we didn't know was that she also suffered from a disease called Severe Combined Immunodeficiency Disease. The type she has is radiation sensitive Dna ligase 4. As rare as SCID is, they type she has is even more rare. They have no information to ease our minds on the outcome of her disease. When she was 5 months old, she got sick and we couldn't get her better. By January, a week before her scheduled Nephrectomy, her pediatrician cancelled her surgery because Makenzie was still sick. She was admitted to the hospital for 4 days and was finally well enough to go home. Only 3 days later, she developed another ear infection. The doctor had her admitted to Anne and Robert H. Lurie Children's Hospital in Chicago. A day later, they had a diagnosis but needed to d genetic testing to determine the specific type of SCID she has. We were told what Makenzie had was life threatening and she needed a stem cell transplant with chemotherapy to condition her body prior. At that point, The doctors decided her Nephrectomy had to happen immediately. She was in and out of the hospital from January through May. We spent 2 months at Ronald McDonald House while she was going through the process. It was discovered that she has chronic renal tubular disease.Makenzie is 184 days out of transplant and we're still visiting clinic every other week. She still requires IVIG treatments.
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