Six-year-old Alana was born with a chromosomal abnormality that is so rare, her doctors had never seen a case like hers before. She does not have use of her legs, is non-verbal, and feeds through a tube. Despite the rarity of her condition and not knowing what her prognosis would be, Alana’s mom always chose to see the positive.
Six-year-old Alana was born with a chromosomal abnormality that is so rare, her doctors had never seen a case like hers before. She does not have use of her legs, is non-verbal, and feeds through a tube. Despite the rarity of her condition and not knowing what her prognosis would be, Alana’s mom always chose to see the positive. “We try to keep up with normalcy. We try to not to let this hinder our family. We always try to make her a part of everything.” Alana goes to school with a nurse and attends special education classes. She likes big, bold colors and has what her mom calls a unique and fun personality.
Mom calls Alana her “little mermaid,” both because she does not have use of her legs and it was an easy and fun way to explain Alana’s condition to her very loving big sister Alyssa. Alyssa says Alana does “mermaid moves” where she moves both legs up and down with a lot of force, like a mermaid would a tail. While it earned her a heartwarming nickname, Alana’s mermaid moves also created a safety issue in her crib. This is exactly why her mom and dad wished for a SleepSafe bed from Make-A-Wish. As she outgrew her crib, Alana was increasingly getting her legs and feet stuck in the slats of her crib and risking serious injury. Her grandmothers, who are her caregivers when her parents are at work, were having a very difficult time bending down into the crib to pick up the growing little girl. Alana cannot use a standard bed, because her movements might cause her to fall out and hurt herself. Mom explained that it is incredibly difficult to get special needs equipment. The SleepSafe bed is electric, has side rails for safety and is fully adjustable so it can be raised to facilitate diaper/clothing changes and feeding. It is also padded so Alana can be comfortable and will not risk hurt herself.
Thanks to a generous donor, on the day of her wish, SleepSafe’s wonderful team delivered and completely set up a new bed for Alana. They also showed the family how to safely operate it. Make-A-Wish volunteers also helped by decorating the bed with new bedding and pillows. Of course they chose a mermaid theme for Alana, including sparkly accents and a mermaid doll to top it all off. Mom says Alana loves being in her bed all day long. “Every time we put her in her new bed, she’s smiling and rests comfortably. She feels happy she has this space and can stretch her arms and legs.
Today, Alana’s Mom is so happy with the impact of the wish on her family that she has started training to become a wish granting volunteer herself. She says, “I always thought Make-A-Wish was only for children with terminal illnesses. I do think there’s still a lack of understanding within the community. I had such a great experience that I want other kids like Alana to get their wishes granted. It made such a huge impact on us.”