According to an article from The Plymouth Herald, Miriam, a 9-year-old from Yelverton, U.K., has been nominated for CBBC’s Big Heart Award for the care she has provided to her younger sister Rebekah. Rebekah has Cri du Chat Syndrome, meaning that she requires constant care. Miriam helps her mother with every aspect of caring for her sister, whether that is feeding her or looking after her while she has seizures. The girls’ mother, Sarah, says that Miriam is “always there” for her younger sister. The family emphasizes the importance of caretakers and push for them to receive more recognition.
About Cri du Chat Syndrome
Cri du Chat syndrome is caused by a deletion on chromosome 5, written as 5p-. The size of this missing piece can vary, but larger deletions tend to cause more severe intellectual disabilities and developmental delays. This syndrome is genetic, but is rarely passed on from parents. Instead, most cases occur spontaneously. The cases in which the syndrome was inherited, at about 10% of cases, involve parents who carry a chromosomal rearrangement known as balanced translocation. Symptoms include severe psychomotive and intellectual disabilities, round faces, smaller heads, low and rotated ears, difficulties in feeding, less muscle tone, and global developmental delay. Cri du Chat is also known as cat cry syndrome, as infants diagnosed with this syndrome have high pitched cries, similar to cats; this cry tends to fade away as children age. It is often the cat-like cry that is the diagnostic for the syndrome, as health care professionals notice it soon after birth. People with this syndrome have difficulty with language and communication. Miriam expresses that her sister “can’t tell us what she’s trying to say.”
About Rebekah and her Family
Rebekah is six years old and is the middle child, between her older sister Miriam and younger brother Joseph. Rebekah also has Cri du Chat Syndrome, meaning that she has severe disabilities and requires constant monitoring and care. Her sister, at only nine years old, has become a primary caretaker, helping her mother who suffers from chronic fatigue. Miriam helps with peg feeding, holding her sister’s head, which has the tendency to fall forward, and watching her while she has seizures. Besides these duties, Miriam also acts as a good big sister and ensures that Rebekah is relaxed, entertained, and safe. Miriam says that she likes to cuddle with her sister and especially enjoys Rebekah’s laugh. Because of the selflessness Miriam demonstrates, she has been nominated for The Big Heart Award on CBBC’s Operation Ouch.
About 1 in every 20,000 to 50,000 infants are diagnosed with Cri du Chat. Currently there is no treatment for this syndrome, but language and physical therapy help children develop and lead happy lives. Some children are taught sign language to help their communication. No matter what the treatment is, early intervention is heavily recommended. To learn more about Cri du Chat Syndrome, visit NIH, The National Organization for for Rare Disorders (NORD), or Healthline.