GEMSS would like to thank Ashley and her mother for their generosity in sharing this story with us. You have made the site come to life with the addition of your thoughts and feelings. Thank you so much!
Fourteen years ago, Ashley was an infant who developed the hiccups, wasn’t eating, and her body temperature became alarmingly low. After a workup and emergency transfer to Boston’s Children’s Hospital, she was diagnosed with ASA (Argininosuccinic Acidemia) which is a Urea Cycle Disorder. Eventually, Ashley had an NG feeding tube (nasogastric) and then a Mickey button (G-tube) to help her eat her special diet. She also developed seizures at that time. When she was 4 years old, she had a liver transplant and has just celebrated her 10- year anniversary of getting her new liver! Her health is much improved since the transplant.
Ashley is a very lovable, talkative teenager who will ‘talk your ear off’ according to her mother Dina! Since she is immune-depressed and can very easily get sick, Ashley is in a small class in seventh grade to eliminate exposure to germs. For example, if she gets a common cold, she may be out of school for 5 days. Her school team and nurse know her well and help communicate any health issues immediately to Dina so they can determine next steps.
Her teachers and family are helping her learn to read social cues of others, and helping her do well in school due to her learning issues. She does her homework every night but likes her mother to sit right beside her when she does it. As they think of transition to the next grade, they are considering the idea of moving her into larger classes. She gets speech therapy at school to help her with expressing herself and developing social skills. Ashley loves her family members and also young children. She has a special spot in her heart for her two grandmothers.
Dina’s advice is for parents to trust their instincts and detect issues early. She says that the teachers and school administrators are very understanding of Ashley’s health needs and even her frequent absences.
Dina says that Ashley no longer has ASA and that they identify more with children and families who have had a liver transplant. “We have had smooth sailing for the past 10 years since the transplant,” says Dina and that is a wonderful reason to celebrate this young woman’s anniversary!
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