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Meet a Child with SCD

an apple and books

Amazing Amarey!

GEMSS would like to thank Amarey 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!

 

AmareyAmarey is a smart, vibrant little girl who, at 3 ½ years old, is a ball of energy and a whiz with technology. She can find Nick, Jr. on a lap top computer, type in the codes to get into her mom’s iPhone,  seeks out YouTube videos on a Kindle, and is eager teach other children how to play games on her Leap Frog! “She is so happy” says her mother, Amarilis. “She loves to dance, sing and memorize songs.” 

Amarey will be heading to preschool in her local school system in the fall, her first school experience. After interviewing many preschools in her New England city and discussing Amarey with her school administrators, Amarilis has chosen a school that fits Amarey’s particular needs. The school has a nurse and the school is air-conditioned all year round to help keep her body cool. In choosing a school, it was also important that the school was very clean and staff were vigilant about sanitizing toys and play areas. Her mother feels like she is ready to let go of her fear of Amarey getting sick and let Amarey experience the joys and opportunities offered at school. In fact, in preparation, Amarey will be heading to day camp at the YMCA for 6 weeks this summer and will be enrolled in dance classes too. Amarilis also thought about people being CPR/first aid/epipen certified as she was visiting schools. 

Amarey does not qualify for an IEP but she will have a 504 Plan. She will also have a Medical Action Plan available for the school to help with medical needs and emergencies. Her school plan will allow for Amarey in styleAlbuterol, Epipen, and Motrin for pain if any of those are needed. Amarilis also expects teachers to be alert for signs that Amarey may be getting ill such as a decrease in her playing and socializing, fatigue, or skin coloration changes that might signify jaundice. It will be important for Amarey to be able to have water with her or nearby for frequent drinks to keep her well-hydrated. 

Amarey was diagnosed with Sickle Cell Disease (type SS) within the first week of her life. Although she has been hospitalized, on average, about every 4 months for various infections, her family is grateful that she recently had an 8 month gap without being hospitalized. When she needs to be hospitalized, it usually starts with a fever, and a temperature of 101 degrees will be reason for admittance. Once ill, she might develop Acute Chest Syndrome, or have low hemoglobin requiring a blood transfusion, low oxygen or respiratory infections. She also has many allergies and is asthmatic. She takes medications daily at home. 

Amarilis says that their family support system is fantastic. She also says that her confidence has grown as she asks more questions, attends conferences, joins in support groups on Facebook, and gets involved in volunteer efforts to help others with Sickle Cell Disease. 

Amarilis says that she hopes that other parents will not be afraid to send their child to school. She advised parents to talk to school’s early childhood team, the school nurse, and administrators to make sure everyone is aware and educated on SCD. “Keep asking questions,” Amarilis says.  She has come a long way in growing her own knowledge and confidence and feels that she has to “give Amarey the life she deserves!  I feel I was blessed with her!”

 

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