Never . Never . Never give up!

19 August 2016

Kiera, a story about courage and determination. Doctors said she would never be able to walk.

Never . Never . Never give up!

Kiara was placed at Nazareth House shortly after she was born as her family were unable to care for her due to her disabilities. The fear of the unknown related to having a child with disabilities is frightening for many families, never mind those who don’t have the resources, knowledge and support systems around them to deal with such difficult and trying situations. 

 

Kiara has Down Syndrome which is a congenital abnormality (means that she was born with it) caused by her having extra chromosomes. This means that physically she has low muscle tone, is of a small stature and has a small head, nose and mouth, she has an upward slant to her eyes, and a single deep crease across the centre of the palm with wide, short hands with short fingers. 

Because of poor muscle tone, a child with Down syndrome may be slow to learn to turn over, sit, stand, and walk and as such usually develops (physically, emotionally, cognitively) much slower than other children. Kiara has had to have a special gastrostomy tube (PEG tube) inserted into her tummy for feeding purposes – because of the low muscle tone, her mouth is not able to physically move around and is not strong enough so that she can chew and swallow food. 

Cognitive impairment, problems with thinking and learning, is also common in people with Down syndrome as well as having delayed language and speech development. Most children with Down syndrome develop the communication skills they need, although it might take longer for them to do so compared with other children. In Kiara case, she has been able to develop a way of communicating her needs and wishes to her carers around her (she can vocalise and makes sounds), although she cannot say actually whole words or verbally communicate like we do. 

 

Since being placed with us for the last 8 years, Kiara has sadly had no family come and see her. It seems that they are completely overwhelmed by her medical condition and have very sadly not being able to make contact with her over the years. 

 

However, Kiara has received an enormous amount of support and therapy from Nazareth House. She has been seen daily by our in-house Occupational Therapist, and part time Physiotherapist, receives daily stimulation from our child care workers, and also receives regular monitoring from the local hospitals and other medical support systems in place. Our OT’s and Physio’s were able to create and make special, individual splints for her hands and AFO’s (Ankle Foot Orthotics) for her legs – because of her low muscle tone, Kiara needed a lot of additional support to try and strengthen her leg muscles. The therapy she has been receiving has focused on strengthening her core tummy muscles so that she can sit independently, more weight bearing on her legs, shuffling with her bottom on the floor, and assisted walking exercises. 

 

Kiara has also been making use of a wheelchair, which she uses to push herself around – she quite enjoys the independence it gives her to move about and go and meet with people. Although you have to watch out as she is also keen to tap your feet with the wheelchair to get your attention if you are not watching her! Kiara's muscles have strengthened enormously over the last few years of having received intensive therapy and stimulation at Nazareth House. While at first she was not able to use the wheelchair, she is now able to use it very independently and can push herself around wherever she wants to go. 

 

Lately, we are moving towards a big step… walking! Kiara muscles have slowly become a bit more stronger and she is now able to stand on her own legs, with the support of her carers of course! She is a bit weary and doesn’t quite trust her little legs yet, but she is also keen to go for walks with you! Kiara enjoys holding onto the back of your legs while she slowly walks by herself next to you. Its an incredible accomplishment for this little girl!

Due to the Down Syndrome, we expect that Kiara would have low muscle tone, would be developmentally delayed, and would not be able to develop and grow like other children… however, at the age of 8 years old, its still an absolute miracle to behold her trying to take her own independent steps! We are still a long way from her being able to walk completely on her own – but this is progress, and we will celebrate it! 

 

Kiara is described by her carers as a lovable girl who is always laughing and has a great sense of humour! She engages with people who walk into the cottage, and always wants to meet new people and make new friends. She is responsive to others, interactive, and thoroughly enjoys the music classes (especially playing on the tambourine!). Kiara also has a mischievous side as she often takes off the other children’s shoes and enjoys playing hide and seek. She is an absolute delight of a little girl who is so full of life!


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