Emma was born with no functioning kidneys and in renal failure. She had surgery at just 5 days old to place dialysis catheters and she has been on dialysis since around a week old. She was in the hospital for the first 127 days of her life.
At home her parents care for her complex medical care. Emma is on dialysis for 12 hours a night at home. Her parents set up her dialysis daily. She also is fed by a feeding tube. Emma gets numerous medications and injections at home to manage her kidney disease.
Emma is 16 months old and has had 4 procedures. She just had her one and only bad kidney removed in a major surgery to make her quality of life better. She is very close to the required size to be listed for a kidney transplant. The hope is that Emma will receive her transplant by the end of 2020.
Emma’s life is very different than a typical 1 year old. She has spent over 5 months of her life in a hospital. She has had a few near death experiences. She doesn’t have the freedom to travel or see family members often due to her complex care and her high risk for infection. Holidays and special occasions are spent with small groups or via technology, and sometimes from her hospital room. She cannot eat by mouth and enjoy some of the special things that typical children get to experience, even bath time is different for Emma. She is also behind developmentally due to her disease and hospital time. She can sit up independently but cannot crawl or walk yet. Her kidney disease has caused her bones to soften and she is at risk for fractures.
Emma has a courageous, strong soul and doesn’t let any of this get her down. This is Emma’s normal and she knows no different.
Her family cannot wait until she doesn’t have to be hooked up to machines and can experience the many joys of life that Emma misses out on by being in kidney failure.
UPDATE: Emma Allen received her kidney transplant April 13th and her mom Tabatha was her living donor.
