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Step-by-step, Anna is facing the challenges associated with a rare chromosomal condition head on

anna-facebookAt 4 years old, Anna Wakefield has overcome more challenges than many people ten times her age. Born with a chromosomal abnormality, Ring 21 Chromosome with Q Deletions, Anna’s life will always be different than others, but her fighting spirit is pushing her to defy expectations and live life to its fullest every day.

Shortly after she was born, Anna began having choking episodes and difficulty eating. After only three days at home, Beth and Matthew Wakefield brought their daughter to Children’s Minnesota’s St. Paul Emergency Department where Anna was admitted to the neonatal intensive care unit (NICU). During their two-week stay at Children’s Minnesota, the family met with a geneticist, genetic counselor and several doctors and nurses, and received Anna’s diagnosis: Ring 21 Chromosome with Q Deletions – an extremely rare chromosomal anomaly in which she is missing a portion of her 21st chromosome.

lynseytjadenphoto_2016_0025The diagnosis was devastating to the family. The geneticist explained that Anna would have some degree of developmental delays, but would likely walk and talk. Because of the rarity of Anna’s condition, there was a limited amount of information about it, which added to the challenge of receiving the diagnosis, there were many questions, and not an abundance of answers. The Wakefields were trained on how to safely care for Anna at home and were discharged from the hospital. The first few months at home were challenging – Anna was on an apnea monitor to track her breathing and heart rate, she had to be held a certain way while feeding her a bottle, and her formula was thickened to avoid choking.

In the following months, Anna had many follow-up doctor appointments and consultations with specialists, as well as one surgery. She started wearing glasses at 3 months old, and at 6 months old her doctor and parents decided that it would be best for her to have a feeding tube placed in her stomach. Anna continues to receive the majority of her nutrition via her feeding tube today. At 2 years old, Anna began experiencing seizures, but after testing and working with a Children’s Minnesota geneticist and epilepsy specialist, they were able to diagnose and control the condition. Anna has not experienced a seizure since beginning treatment via seizure medications.

anna-mightysmallNow, at 4 years old, Anna moves independently by “scooting” on her bottom. Over the past year she has learned, with the help of her physical therapist at Children’s Minnesota, how to walk with a walker – but it was not an easy process. Anna is sensory sensitive, which means getting her to hold on to the handles of the walker was a challenge in itself. Thankfully, Anna had a very creative physical therapist. First, she tried several different walkers – all with different handles, which was not successful. Then, she tried taping hospital washcloths to the handles, since Anna prefers to touch soft items. However, they were not soft enough for Anna. Their next idea was a bit out of the box – the therapist cut up thin, knit winter gloves and taped them to the handles. Surprisingly, Anna was willing to try. Before long, Anna was walking all over – quickly abandoning the gloves, because the motivation to walk now was worth it for her.
“It was honestly amazing to witness the whole process, and Anna couldn’t be happier to be walking like a big girl with her walker now,” said Beth Wakefield.

Anna also sees a speech therapist at Children’s Minnesota. She doesn’t yet use words to communicate, but finds other ways to express herself.

Anna sees 10 specialists periodically and receives physical, speech and occupational therapies.

“She is such a hard worker and continues to amaze us,” states Beth. “Every milestone she reaches is such a huge celebration, because we know she has to work so much harder to accomplish things than a typical child.  We are so proud of her.”

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